Benefit Flyer

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Shailee Jo Webster Memorial Benefit

We are having a benefit concert in memory of Shailee this month. there will be music all day, games, raffles, and food. all the proceeds are going to the 5p- socitey and some to the Shailee Jo Webster Fund to help other parents that have a child in a NICU unit and need help to be with their children. The information follows:

Saturday August 22, 2009 from 10 am to 8 pm
Harrison Smith Park, Upper Sandusky, OH
Line Up:
Sounds of Music
Nick Wallace (singer/5p- socitey member)
Karaoke Express and Friends
Jason Scott Hook
Dominance
Sleep-In-Aether
Unhinged

I made some flyers but they are a word document and i am not sure how to post something like that. we are asking a donation in the amount of $5 for ages 13 and up and $2 for ages 12 and under. donations are not mandatory but will be greatly apprieciated.

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Obituary

The Following link will take you to Shailee's obituary, I have had a lot of people ask about it so I thought I would post it here for anyone that may want to print it or see it.

http://www.dailychiefunion.com/obits.html

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Friday, July 10, 2009 Little Angel

Shailee Jo Webster passed away today around 4:45 pm. She is now with God and she is finally happy and well. Shailee touched so many different people and in doing that she has brough us all together as a whole, maybe that was her purpose all along. But she has her wings now and she will forever be comfortable.

Little Angels

When God calls little children to dwell with Him above.

We mortals sometimes question the wisdom of His love.

For no heartache compares withthe death of one small child,

who does so much to make our worldseem wonderful and mild.

Perhaps God tires of calling the aged to His fold.

So He picks a rosebud before it can grow old.

God knows how much we need them and so he takes but few,

to make the land of Heaven more beautiful to view.

Believing this is difficult still somehow me must try.

The saddest word mankind knows will always be "Goodbye".

So when a child departs we who are left behind,

must realize God loves children,

And angels are hard to find.

Shailee's funeral will be Tuesday, July 14, 2009 at 10:00 am at Oak Hill Cemetery in Upper Sandusky, Ohio. All the details should be in Monday's paper (The Daily Chief Union, and Defiance Crescent Newspaper). Thank you to all that have followed Shailee's progress from the begining, and we will be in touch soon.

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Sunday, July 5, 2009 Not Alot Of News

Shailee is having a much worse day today. her oxygen is back up to 85% and she is still being medicated around the clock. she is just up and down, down more than up, but she is still hanging in there. she had a few spells overnight last night, and has been sleeping alot today. other then that there is no new news. i will keep updating as i can.

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Saturday, July 4, 2009 Update

Shailee has been doing really good the last couple of days. her oxygen was down to 40% the last time i talked to them (about an hour ago) and she hasn't been having any spells.they are still getting alot of secretions from her but it hasn't been as thick as it was. they told me that she has been awake a bit more then usual too. they also told me that she has pulled her ng tube (feeding tube) out of her nose several times today! we are hoping these are all good signs, but we don't know if she will stay this way or not. it is all a wait and see thing. i will keep you updated as much as possible.

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Wednesday, July 1, 2009 Some Updates

Shailee has been up and down the last few days. they have increased her feeds to 84ml every three hours and that is the one thing that she is doing good with. she had one good day with no spells but isn't showing improvement. a few days ago her oxygen was at 65% then up to 75% then up to 80% and now up to 100%. it has been rising and going down a little then rising again. she had 3 bad spells the other night and 1 during the day (that one was b/c she pulled out her trach!!!) last night she had 3 minor spells and 1 bad one today. the spell she had the other day she dropped her oxygen to the 10's and her heart rate to the 90's but she did come out of it without bagging. now today they said that she had blood tinged secretions coming from her trach which they think is coming from her lungs, and they are sounding worse so they feel her lungs are detierating more. the nurse told me even though she is going through all of this she still takes time to stay awake and interact with people. other then these things nothing has changed she is only being given comfort care at this point. I will update more later.

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Pictures

The pictures that were taken at the hospital are posted to the photographer's website for me to share with all of you just go to the following site and follow my instructions to gain acess to view them.

www.serendipitybygerri.com

1. click enter
2. click client
3. type shailee in the password box and click enter

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Sunday, June 28, 2009 Update

We are back home from spending the weekend with Shailee. We had her baptism done at the hospital on Saturday, and she had professional pictures taken of her today which will be on a website soon and i will post them so you can see them. we signed the DNR today as well. they are pretty much going to do everything the same other then they are no longer going to do any labs on her, they will not give her any new medications, and if she has a bad spell where her oxygen drops down to 10 or below they will not bag her back up, they also will not be wrapping her belly or putting her shoes on her anymore as that only makes her more uncomfortable. they will continue all of her current medications as well as her feeds and those will increase with her weight gain as needed, they will also contine to give her medications to help her relax such as the morphine and adavant as she needs it. as far as miss shailee goes, well she isn't doing the best. her oxygen settings are still very high they were at 71% when we left today, she is very irritable and not sleeping well without medications to help her relax. she is breathing very heavy and fast and her secretions are very excessive as well. they are constantly suctioning her and it just comes right back. they can't tell us how long they think she will make it they just said it could be days or weeks. her lungs are not showing any signs of improvment and they don't seem to think that they will change, also they said the higher the vent settings go the better chance there is that she could end up with a hole in her lungs which would lead to her needing a chest tube which isn't something that we want to happen either. but we all spent alot of time with her this weekend and spent alot of time holding her and just loving her and being with her. it is pretty much in God's hands from her on out. i will keep you all updated as much as we can. thank you for all of the kind comments they mean alot to all of us in shailee's life.

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Wednesday, June 23, 2009 Bad News

I wanted to update everyone and let you know that Shailee has taken a turn for the worse. she is no longer responding to any treatments and they have done all that they can. she is totally oxygen dependent now and her lungs are beyond repair. she is not holding her oxygen levels well and she is dropping to levels of 1 or 2 and it is getting harder and harder to bring her back and she is having many episodes in a single day. we are going to spend the weekend with her as they don't think that she will be with us much longer. they wanted to put her in hospice and just make her "comfortable" but we don't want that to happen so we are working with the hospital on filing a DNR with Shailee. we don't want her to suffer anymore, and her health is only declining more each day. she has to constantly be sedated and dosed with morphine to keep her calm enough to live and that is not what we want her to have to go through anymore and after seeing her today we can tell a difference in her. she is no longer comfortable and happy. none of us wanted to see it come to this, but it is in god's hands and only he knows what is best for her. i will post again as soon as i have a chance.

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Saturday, June 20, 2009 Updates on Shailee

Shailee is still doing good for the most part. She had her new custom made trach put in yesterday and it fits her nicely. and since the trach has went in, her oxygen percent has been down to 30% which is great compared to what it used to be at. she is in a contact isolation room and you have to wear a gown and gloves if you are going to be touching her b/c right now she has MRSA which is an infection that once you get it you will always carry some form of it, but she wont always have to be in contact isolation, it is only in her nose right now and she isn't showing any signs of being infected at this time but it can spread to the other people and babies there so that is why they put her in her own room so others didn't get it. they are watching it and testing her often to make sure that it hasn't got in her blood which it hasn't so that is a good thing. she is taking 73ml of formula every three hours and she is doing great with that as well. they had us watch a trach care video yesterday b/c they are going to start trainging us to care for her. the home health equipment company came to our house yesterday and checked out the outlets and such in the house to get ready for her equipment that she will need to come into the house. we will also have to do training with the company to learn how to use all of the machines that she will have when she comes home, and she will have quite a few of them to learn how to use. Shailee has figured out how to make small noices by pushing air around her trach pipe but they are very very quiet since her vocal cords are still messed up and b/c not alot of air flow gets to them due to the trach but they said that if she will be able to talk that later when she is older she will be able to cover her trach up and talk. other then that she is doing good and there haven't been any other changes. i will update again when i know some more.

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Wednesday, June 17, 2009 Updates

Shailee is still doing good and she is stable. She does have an infection right now :( but it is only in her nose and they said as long as it doesn't get into her blood she will be fine with it, she is still on antibiotics as well to help it. She has been moved into her own private room due to the infection and b/c she wasn't getting enough rest with all the noises in the unit, but they said that they are going to keep her in this room until she goes home. They ordered her home vent but it is going to be a month before they can get it b/c they had to special order it for her. She will be having her trach tube changed on Friday sometime as well. She is healing up good from surgery, and she isn't being sedated all of the time now. she is up to 73ml of formula every 3 hours now and she is tolerating her feeds fine. as of right now we are planning to go stay with her for 5 days in July to learn how to care for her so she will be able to come home. other then that there is no new news, i will update again as soon as i know more.

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Marla!

Marla if you read this, please email me..........stacyloaks@yahoo.com

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Sunday, June 14, 2009 Updates

Shailee is still stable, but she has been having some issues. She is still very irritable and she keeps having bronch spasims again. they also sent her secretions off to be tested b/c they think that she may have an infection again, but we wont know for a few days if the cultures grow anything or not. They said that she is having alot of secretions again so they think she may be getting pneumonia again b/c her lungs sound like they have fluid in them again. Other then that there are no updates. I will update as soon as i hear more.

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Friday, June 12, 2009 Surgery Today

Shailee had her surgery today. We got there at 9 she was scheduled at 10 and got in at 12 and never came out til 2:30. I held her for an hour and a half before she went into surgery and she came out of surgery with no complications so her trach tube is placed and her vent is hooked to her trach. They said they will keep her pretty well sedated for the next day or two to make sure that she isn't moving too much and causing irritation and not allowing the site to heal. they are not going to start feeding her formula again until sometime tomorrow so right now she is only on iv fluids. we couldn't stay with her long after her surgery b/c she needed recovery time but we did get to see her for a little while. the surgeon also talked to us and said that she did great and she was and still is stable. when i called to check on her after we got back home they told me that she woke up a couple of times and was very irritated and she caused a broch spasim due to getting upset and they ended up giving her some morphine to help her with pain and to relax more. so as of right now she is still doing great and now she is finally making steps towards coming home! She also weighs 8 lbs. 14 1/2 oz. now but i am sure that she may lose a few ounces being off of her feeds. but she is doing good and is in the recovery process, i will update more when there is more information.

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Tuesday, June 9, 2009 Updates and Pictures

Shailee is still doing good. and her lungs are still clear! the surgeons were getting together today with the heart doctor to see if he would clear her to have her trach done, and if he does then she will go into surgery on Friday. We are meeting with the doctors tomorrow at 12:30 for a care confrence to go over everything that is going on with shailee and what the plan is for surgeries and so on so we should know alot more tomorrow, hopefully. here are the pics from our last visit also. i will update more tomorrow.

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Sunday, June 7, 2009 Today's Visit

We went to see Shailee today and she is still doing good. She weighs 8 lbs. 12 oz. now!! she is up to 68ml of formula every 3 hours now. she still hasn't been scheduled for surgery but they are going to talk to them tomorrow about getting her in ASAP b/c something happened over night. yesterday's chest x ray was really bad and hazy and then the one they did today was clear!! so they want to get her in to get the trach done while they have this open window to do so. so hopefully i will know more early on tomorrow about when she will have this done. other then that there haven't been any changes with shailee. she is still on all the same medications, she still has her orthopedic shoes on 22 hours a day. hopefully they will get her trach in soon so she will be able to get out of her bed more and not have to lay down all of the time. I will update more when there is something to update, which doesn't happen very often anymore b/c most of the time i am told "there haven't been any changes" which is better then bad things happening at least. so don't worry if i don't post in a bit, but i think it will be soon since they want to get the surgery done.

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Tuesday, June 2, 2009 Recent Updates

Shailee is still doing ok. She is still on antibiotics for her pneumonia, but her lungs have cleared up some, and her pulmonologist has cleared her for her tracheotomy, but they haven't set a date yet, so we are just waiting to here when they are going to do it. she had to be resized for new pediatric shoes b/c she is growing and the current ones were starting to leave creases on her feet so she will have new shoes in a few days. they had to reintubate her sunday night b/c she pulled her tube out again, but that is b/c she is 2 months old now and she is being more active and awake more which is normal so she thinks that her tube is something to play with. now they are retaping her tubes a couple of times a day b/c she is always trying to mess with them. other then that there really haven't been any changes, i will update more tomorrow after we visit with her.

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News In My Family Life

People have been asking how we are holding up and how the other kids are so i thought i would update everyone real quick. Me and the hubby are doing good, he is still working all the time, and i am doing great at keeping busy with the kids and the house and school. we got all moved into our new house and are pretty much settled in. the boys are both playing ball so we are doing 4 games a week, and once baseball is over i will have one in football two weeks later! shailyn is doing good, she is sick right now, probably just her allergies and what not but it isn't stopping her from being a typical 2 year old. the boys have their last day of school on the 4th, i don't know that i am ready for summer break yet, but we will live....lol. and chase graduated from kindergarten today as well, he is very proud of himself as well as we are. that is pretty much all that is going on here. here is a pic of chase and his friend at graduation today, he wanted me to share it with all of you.

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Friday, May 29, 2009 Today's Update

Shailee is doing ok. Her pulmonologist did NOT clear her for the trach surgery, he said that her chest x ray looked too hazy, so he ordered a lung ultrasound, as well as a gram stain which tests her secretions for bacteria infections. well the cultures grew out so she is on antibiotics again for an infection but they said that it is minor. she will be on them for 7 days and they will test her again. he said that he is not going to clear her until he is 100% sure that she doesn't have an active infection. other then that she has been doing great, she is staying awake alot more and playing and things, but she is no where near being in the clear, she has a long road ahead of her. that is really all that is going on with her right now and i will update more as soon as i know.

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Wednesday, May 27, 2009 Today's Visit

We went to see Shailee today, and she is doing ok. they did a 12 hour ekg yesterday and right after we got there today they started attaching all these wires to her tiny little head b/c they were and still are doing a 24 hour eeg with video to rule out seziures. they also did an eye exam today and the eye doctor told us that the nerve that goes from the eye to the brain is smaller then it is suppose to be, and it could grow eventually or not, she could have great vision to poor vision, it is just another one of those we will have to wait and see when she gets older types of things, like pretty much everything else it with her. they also started her on meds for reflux, which i mentioned to them like a month ago and they acted like i was crazy and she didn't act like she had it at all, guess i was right after all. we talked with one of the lnp's today as well and she pretty much told us that shailee is always going to have some degree of pnuemonia due to the secretions and due to her not swallowing! other then that the surgeon was there today and talked with us and they have found that they are not going to get that 4 to 6 week window that they wanted since she does have the secretions, so they are talking about doing the trach surgery as early as this friday, or next week sometime, but we won't know for sure until tomorrow i would guess. they are not going to do the g tube and ompalecele surgery at this time b/c they don't feel that it will be safe for her due to the pulmonary issues that she has since the organs would be pushed up into her body which could cause pulmonary hypertension, so they are going to wait on those surgeries for a while longer. but she said that if all goes well that after the trach surgery she would still get to come home but she would have the type of feeding tube that she has right now, which is one that actually goes in her mouth and down her throat. i didn't take any pics today as she was already very upset from the eeg and the eye exam, she got so upset that they had to bag her to get her oxygen level back up so i didn't want to mess with her anymore, b/c she doesn't like the flash very much either and it is too dark in there to take pics without it. i will update more on her as i know it.

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Monday, May 25, 2009 Yeserday's Visit

We went to see Shailee yesterday, and she is doing ok. she still has the pneumonia and they did another chest x-ray and they said that it was a total whiteout, so they are extending her time on the antibiotics for 7 more days and she is getting chest pt 2 to 3 times a day to help break it up. she was sleeping the whole time that we were there b/c they had to give her adavant earlier b/c she had one of her spells again and was very irritated. but even though she had a bad day they still let me hold her. they chaged her feeds to 64 ml every three hours and she is still tolerating them very well. they weighed her yesterday and she lost 10 grams, but that is no big deal. we were also watching her and she looked as if she was trying to swallow yesterday, i don't know how to explain it but that is just what it looked like she was trying to do, so i hope that is something that will come into play for her eventually, but as usual we will have to wait and see. Shailee is 2 months old today too!!! Well that is pretty much all there is, no major changes,but we don't want or need alot of channges so quiet is good. Happy memorial day all!!

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Wednesday, May 20, 2009 Our Visit

Shailee is still doing ok, she is stable. We all got to hold her during our visit, so that was nice, and she was wide awake the whole time we were there! Shailee weighs 7lbs 12 oz now, but she really doesn't look it. they raised her feedings to 62 ml every 3 hours and she is still tolerating them great. they took her off the robinul b/c it wasn't working for her anymore, and they put her on something called atraphine which is an arisol that she gets in her et tube every 3 hours. the surgeons looked at her belly also, and it is compltley healed! so she no longer has to have it wrapped and medicated, and it is open to air now, and she is also going to get 4 hours of tummy time every day now too since it healed up. they will still have to surgically close the abdomin wall, which they plan to do when she is able to get the trach and g tube surgery. she still has pnuemonia and is still on the antibiotic, but she is getting better. her are the pics from the visit.

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Tuesday, May 19, 2009 Update

Shailee is still stable and doing ok. she did have another bronch spell last night and it was a pretty bad one b/c they had to bag her and give her a breathing treatment to bring her out of it. but she is ok now. they also started her back on the robinul for her secretions b/c they were getting excesive again. she is now up to 60ml of formula every 3 hours, which is 2 ounces, and she is still tolerating it good. other then that there are no changes.

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Sunday, May 17, 2009 Today's Visit

We went to see Shailee today, and she is still stable and doing ok other then the pneumonia but it isn't as bad this time around. Bill got to hold her for a little while today but she started getting annoyed and wouldn't settle down so they had to put her back in her bed, but at least he still got to hold her for a while. she is still having alot of secretions, but they are managed. they had to remove her pic line today b/c i noticed some dried up pussy stuff and i pulled it back and her skin looked raw like the dressing was rubbing on her arm wrong, but it turns out she was having a reaction to the adhesive on the pic line so they removed it and placed a regular iv in her other hand soley for the purpose of giving her the antibiotics she is taking right now, but once they are done they will remove the iv. i guess it was a good thing that i noticed that on her arm since they didn't know it was there yet. they are treating the area with antibiotic ointment as well to clear it all up. her feeds are up to 57ml now and she is still tolerating them well. other then that there have been no changes. here is the pic from today and i will update more tomorrow.

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Saturday, May 16, 2009 Update from Friday

I went to see Shailee Friday, and unfortunatley she does have pneumonia again :( so they are once again treating her with antibiotics to get rid of the infection. she isn't as bad this time as she was the last time so they caught it early. they checked for it because on thursday night shailee started having bronch spasims again, and she did this like 4 or 5 times so they had to sedate her to stop them. so of course this pushes her back for surgery once again because she has to be infection free for 4 to 6 weeks after an infection, so it is going to be a long time before she gets to come home :( they also drew blood and they are not finding any infection in her blood which is good but she does have raised white blood cells which indicates an infection, so they did a lumbar puncture on her last night to test and see if she has an infection in her spinal fluids. they said the results wouldn't be back for a couple of days but the longer they don't hear from them the better. outside of that she is doing ok, and is stable. she weighs 7 lbs. 2 oz. now and she is still taking 54ml of formula every 3 hours and tolerating it good. I met with the geneticists assistant yesterday as well and i got the final report on shailee's condition as well. she is still considered mosaic cri du chat, and they didnt really change alot other then the break point on the 5th chromosome is at 13.3 instead of 13.1 and the additional material is the 5th chromosome where it duplicated itself and inverted itself before it attached (so it is upside down) the additon is point 11 to 13.1 so she is still missing the same amount as before and what is missing didn't duplicate anywhere. but there is no other cases of cri du chat like hers so they still have nothing to go on and can't really tell us much as to how she will be when she is older so we will just have to wait and see how it goes later down the road. they also FINALLY let me hold her yesterday!!! and i held her the whole time that i was there! bill was sad when he heard that because he wasn't able to go with me since he had to work, but they said that he could hold her sunday when we went in so he is very excited about that. other then that there are no changes at this time. here is the pic from yesterday, and i will update more soon.

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Thursday, May 14, 2009 Update

Shailee has had a bad day today. she has had several bronch spasims and was lowering her heart rate and oxygen. they took cultures from the tubes to make sure an infection wasn't in the tubes, which they should have back the results tomorrow. they had to give her medication to help her rest today so she wouldn't have so many problems. we are keeping our fingers crossed that there isnt any infection that has spread to her. but as of right now she is stable, i am going to see her tomorrow and i will update more then.

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Wednesday, May 13,2009 Today's Visit

we went to see shailee today, and she is still doing good. she is no longer on the lipids but they are still running a little bit of fluids into her just to keep her pic line open in case they have to us it again, they want to be sure before they pull it out of her completley. she seems to love her crib, and she has all the room in the world in there, and it also makes her look really small compared to the other bed she used to be in. she has a crib mobile that she likes to look at, and they have also found that when she gets irritated that music calms her down so now she has her own little radio in her bed with her as well. we saw her physical therapist today and she said that shailee is still doing good, also told us about the crib gives them more options for different positions to put her in so they are going to be trying out different things now to help make her more comfortable. she is only allowed to have her shoes off for one hour a day, which i bet she loves that hour b/c those things are pretty heavy for a little baby, but they said that her feet are tolerating them well and they are keeping an eye on her skin to make sure that the shoes aren't causing any problems, but so far so good. we also got to see her belly today and there are no open spots on it now, so that is good b/c they said before that if it finished healing up that they would be able to close it when they do the trach and g tube surgery so hopefully once she goes into surgery they will be able to do that one at the same time so they don't have to do a bunch of seperate surgeries. other then that nothing has changed and we are just taking it a day at a time hoping that she will stay infection free for the whole 4 to 6 weeks so that she is able to go to surgery and come home. here are the new pics and i will update again tomorrow.

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Tuesday, May 12, 2009 Today's News

Shailee is still doing good. she did have to have some meds to help her relax early this morning b/c she was getting irritated but she is ok now. she is up to 54 ml of formula every 3 hours and is still tolerating it well. they even had her in a bouncy seat today!! she is in a crib now instead of the hospital bed thing, and she loves it, they even gave her a crib mobile to listen to and look at, and they said that she really likes it alot. I also talked to the geneticists office today and they have all of the final reports in and me and bill's cells are normal so this is just something that happened and she didn't get it from either of us. she still has the same diagnosis of cri du chat and hers is a mosaic form b/c she has the deletion and the addtion, there is very little information in a case like hers so they really don't have much to go on, but they did say that the addition is part of her 5th chromosome that duplicated itself but they said that isnt going to affect anything so it isn't going to cause any additional problems for her, but the deletion will still cause problems for her, but there really isn't any way to tell how severe or mild she will be until she starts getting older, so we will have to take it day by day and wait and see how things go. but as of right now she is still doing good and we all hope that she will stay that way long enough to get into surgery so she will be able to come home. we are going to see her tomorrow so i should have some new pics for you then.

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Sunday May 10, 2009 Mother's Day Update

HAPPY MOTHER'S DAY ALL! Shailee is still doing good. there have literally been no changes since my last update. She is still tolerating her feeds, and she is still on all of the same medications. I like it when there is no news because that means that nothing bad has happened. Sorry i haven't updated daily like normal but i don't have as much time these days because we have been very busy since the move getting things unpacked and in order and then there is the boy's baseball games and practices, so we have all been busy day and night. i will try to update more often as things start getting settled down more. talk to you all soon.

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Friday, May 8, 2009 My Visit With Shailee

I went to see Shailee today, and she is still doing good. she was wide awake when i got there, and stayed that way for about 45 min, then they came and did her chest therapy which just put her to sleep. i didnt get to see her with her shoes on,but i did see the shoes and i did take a picture of them as well. they have her up to 53cc's of formula every 3 hours, and they have been uping her amount every third feed as long as she is tolerating it, which so far she is. she weighs 7 pounds 1 1/2 ounces now!! so she is still gaining and not losing so that is a good thing. she is still on the antibiotic, and her normal heart medications as well as the robinul for her secretions. she didn't sound very raspy in her chest today so that is also good news. she also had a heart echo today and they said that it looked good as well, no major changes but nothing bad either. other then that there are no new changes. here are the pics that i took today, and i will update again tomorrow.

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Thursday, May 7, 2009 Shailee's Update

Shailee is still doing good, and is stable. she got her orthopedic shoes today and has been wearing them since 6pm today. she is still tolerating her formula, and they put her back on the robinul for her secretions. she is also sucking on a pacifire now, but they said she only likes it when they dip it in sugar water, but either way she is developing her sucking reflex which as what matters. she is still staying awake more and being more active, and they said that her chest is clearing up very good as well. other then that there haven't been any changes. we are going to see her tomorrow, so i will take some new pics and hopefully have more good news.

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Wednesday, May 6,2009 Update

Sorry i din't get this posted last night but we have all been very busy with the move and the boys' baseball games/practices. But, Shailee is still doing pretty good, she is feeling much better. she did have herlast cast removed last sunday, and the surgeons have ordered special shoes for her to keep that foot straight and she should get them sometime Thursday. the nurse said that she stayed awake for almost 4 hours straight and was in a great mood the whole time, she was just looking around and moving all over the place, so she is being very active. they also said that her chest sounds much better and she hasn't had anymore of her "spells" which is very good. she is still tolerating her feeds very well also. so far the infectious disease doctors (yes they finall saw her) haven't found anything yet, but they are not done with all their tests so i will keep you posted. other then that there haven't been any changes, so i will update later.

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Tuesday,May 5, 2009 Today's Update

Shailee is doing much better today. She is awake more and alot more active and content. she is still taking the antibiotics, and she is no longer running a fever. they have started her feeds up again, but they only started her out at 10cc's every 3 hours, and so far she is tolerating them well. they aren't messing with her too much so not alot has changed. they are pretty much just doing what they have to do to take care of her and make sure that she is feeling better. she hasn't seen the specialist to check out her immune system yet, but they are hoping to get her in with him sometime this week. her lungs are continuing to look better, but she is still having alot of secretion problems since they can't put her back on the robinul quite yet, but they are hoping that she will be able to start taking it again really soon. so all in all she is doing ok, but much much better then she was a couple of days ago. I will update again tomorrow.

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Sunday, May 3, 2009 Early Update

Hi, I have managed to be able to get online to update a little early! we went to see shailee today, but i wasn't able to get any new pics today because i haven't located my camera from the move yet. I don't really have alot of good news today, shailee is once again ill. she was running a fever of 102 to 103 today, but they did get it down with some tylenol. they did blood cultures on her and her white blood cell count is high so they said they know she has an infection, but not sure where because they did a chest x-ray and they dont feel that it is pnuemonia, they started her on antibiotics again and they said they are not growing anything in the cultures yet so they are calling in an infectious disease specialist tomorrow to have him look at her and see what is going on and if there is something going on with her immune system. they also had to give her a blood transfusion today because of the infection. they also had to stop all feeds on her because she isnt' digesting it well being sick and it is all coming back out green due to the infection and not digesting, so they had to run an iv today and put her back on tpn's and lipids for the time being. they also had to take her off the robinul for her secretions for the time being since she isn't digesting things well and that isn't something that comes in iv form, so her secretions are going wild now too, but they did give her lasiks today to help with that some. she was very pale looking when we went to see her and you could tell that she just didn't feel good at all, and she didn't want to be messed with at all, but i have spoke to the nurse since she has been given the blood and she said that she has some color back to her, and she was being more active so that is good news. they also stopped the medicated powder for under her arms because the yeast infection cleared up there, and it is almost gone on her bottom as well. the surgeons said that they wont even think of taking her for surgery for at least 4 to 6 weeks after the pnuemonia, and since she is sick again it will get pushed back even longer now, so she is definatley going to be there for a long while yet, but we just have to take it day by day and see where things go. she isn't having a good time right now, but she is a fighter so we will keep hoping for the best. i will update again as soon as i get a chance.

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Friday, May 1, 2009 Last Update Until Tuesday

Shailee is still doing well. the nurse said that her chest sounds much clearer then before. her last chest x-ray looked better as well. they lowered her to 68 cc's of formula every 8 hours, but it is because they had her on 20 calories and the changed her to 24 calories, they wanted her to take in less fluids but the same amount of calories due to her heart condition. the surgeons also came and checked her out today and said that things still look good, but they wont even consider her surgery until at least 4 to 6 weeks after her having the pneumonia, so she is still going to be there for a while yet. other then that she is the same today. we are going to see her on sunday, and i will make sure to get new pictures, i will update again on tuesday once we have our internet connected at the new house.

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MOVING

we found a much bigger, and much cleaner home to move into, so Shailee will have a good place to come home to when she is able to. we are going to start moving tomorrow, but i will still try to update tomorrow night. but we plan to get the rest of the things moved on Saturday, so there will not be any updates from Saturday to Tuesday. the cable company isn't able to come hook up our service at the new house until tuesday morning, so we will not have internet during this time, but i will update again on tuesday night.

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Thursday,April 30, 2009 Another New Update

Shailee is still stable and doing well. she now weighs 6 pounds 12 ounces, so she is doing well with weight gain. they have her up to 74 cc's of formula every 4 hours, and she is still tolerating her feeds well. she also had a good blood gas test this morning so they turned her ventalator pressure down to 12 today, so hopefully that will keep improving. they are still doing the teatments for her to help stop her from having her really bad spells. she has had a couple minor spells but nothing serious. we are going to go up and see her on sunday so i should have some new pictures then, as long as i don't misplace my camera in the middle of moving.

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Wednesday, April 29, 2009 Shailee's Update

I have called and checked on shailee a few times today, and she is doing ok. she is being given breathing treatments a little more regularly to help prevent her from having her spells, and so far it has been helping out alot. She is still just taking it easy and they are not doing alot to her because they are trying to get her healty enough to go to surgery. the geneticist's office called me today with some news from their further chromosome testing, and they are saying that the "unknown" addition that she has on one of her #5 chromosomes is actually some of the deletion from the other chromosome #5. so basically what i know is that part of one #5 deleted or broke off and attached to the other #5, so she still has the deletion, and she still has the cri-du-chat diagnosis, but she may not be missing as much as they once thought. they told me that they have no idea how this happened and they have never seen this before, so if this is going to help her or not in the end we wont really know until she is getting older and as she grows. but we will all hope for the best and hope that it will help her instead of work against her. they are planning to meet with us again soon to go over things with us in more detail, and as soon as that happens i will post more about this.

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Wednesday, April 29, 2009 Newspaper Article

The story about Shailee was in our local paper today. here is the link: http://www.dailychiefunion.com/

I know you will be able to access today and tomorrow, but i am not sure once it is a couple days old if you will be able to see it or not, but if i can get a different link i will post it as well.

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Tuesday, April 28, 2009 Today's Updates

I have called and checked on Shailee through out the day today, and she did have a couple of spells overnightlast night but thank god they weren't major ones and she brought herself out of it. the nurse told me today that she has had a really good day today, and there were no problems. she has spent the day today resting and catching up on her sleep. the lung doctor said that her chest x ray looked much better but is still somewhat hazy, and they are still looking into getting her something to help get that fluid out of there. she is still eating 71 cc's of formula every 4 hours and they said that she is tolerating her feeds great, so that is good. other then that there are no new updates, i will update more tomorrow. her article is suppose to be in our local paper tomorrow, so if it actually makes it there tomorrow i will post a link to it for you all to read.

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Monday, April 27, 2009 Today's Update

Sorry i am late posting again, we have been really busy trying to get things packed to movethis weekend,but keep checking back b/c i will always get the updates up sooner or later. I talked with the hospital several times yesterday, and she has had two of her spells (bronch spasims) during that time. the last one wasn't as bad as normal and she came back just with a breathing treatment, but the first one they had to bag her and put her breathing tube in deeper to get her out of it. they did a chest x-ray yesterday too but i haven't got the results on it yet. she is still raspy sounding but there isn't much that they can give her to help that right now with the heart meds that she must have but they are trying to figure something out. the surgeons came in and looked at her foot and said that it is looking great, and they put a new one on and said that it should be her last cast!!! other then that there was no other changes,and i will update again later.

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Sunday, April 26,2009 Today and Yesterday's Update

Sorry i didn't update yesterday, but we had a busy day here as we had a birthday party for the boys and had alot of people over. But Shailee is still doing good. she is stable, and resting. we went to see her today, but there are no new pictures because i left and forgot my camera. she was uped to 71 cc's of formula today and she is tolerating it well. she is also getting her last dose of the antibiotic today, but she is still very raspy sounding but she is having a chest x-ray tomorrow so they will go from there. she will be having her cast removed tonight and a new one put on tomorrow as well. we spoke with her heart doctor today and he told us that she is making baby steps in the right direction, which is good, and she is improving well. he did say that she will eventually have to have surgery on her heart to close the two holes in her heart, but it isn't something that they are going to do any time soon, they want wait as long as they can because the bigger and older she is the safer the surgery is going to be. Also she has had what they thought to be a diaper rash that is still there after almost a week, well it turns out that it is a yeast infection, which they found out because it is now under her armpits, but they are treating it with a different ointment as well as a powder for under her arms. the robinul is still working well and she isnt' having as many secretions but they are still suctioning due to the fluid that are in her lungs. she is most likey going to come home on the two heart medications and the robinul as well. they are still planning to do the surgery for the g tube and the trach but they have to wait until they are positive that the infection from the pneumonia is totally gone before they will do anything. other then that there are no updates, i will update more tomorrow.

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Friday, April 24, 2009 Another Quiet Day

I have called and checked on Shailee several times today and she is doing good and is still stable. she was uped to 70cc's of formula every 4 hours and she is still tolerating her feeds ok. They told me that she has just been resting alot today. she is still raspy but they are going to try a stronger antibiotic to see if that will help clear it up more. other then that there have been no changes today. i will update more tomorrow.

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Thursday, April 23, 2009 A Quiet Day

I have called and checked on Shailee several times today and she is doing just fine today. she hasn't had anymore problems today, and has been resting all day today. they raised her up to 69 cc's of formula today, and that is the only change today. other then that they have left her alone to rest after the day she had yesterday. so she is doing good and is stable which is all that matters. i will update more tomorrow.

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Wednesday, April 22, 2009 A Very Scary Day

We went to see Shailee today, and all was well and she was stable. But she had a very bad episode today where her oxygen started dropping and suctioning her wasn't helping and then her heart rate started dropping dramatically, they called down for Albuterol right away because they thought that it was just from her pnuemonia and the phlegm, she was given 4 puffs of the medication, but that didn't help at all, so they had to bag her to keep her oxygen and heart rate up and she was turning blue fast. they thought that there was a plug (phlegm) stuck in the breathing tube so they had to take out her tube and reintubate her with a new tube, it took them two tries to get the new tube in and they had to bag her in between but they got it in and she was returning to normal again, her heart rate stayed up for about a half hour afterwards but they said it was only from all of the stress. there was nothing in the tube but they said it could have fallen off, or it could have been caused because before this happened she was pulling on her tube very good and she could have moved it, so we put a new sock on her hand before we left so she couldn't grab it anymore. they did a chest x-ray right after, and her lungs still look a little hazy but everything looked good in terms of her lungs and the placement of the new tube. we stayed until we were sure she was stable as well. and i called and checked on her again a little bit ago and she said that she is still doing good, and is still stable,and hasn't had anymore episodes, so lets hope it stays that way. they also draw food out of her belly through her feeding tube before they feed her to make sure that she is digesting it ok, and today they pulled out bile instead of food or curds, which means she didn't digest the prior feeding, but they said that it was ok and that it's normal for that to happen once and a while, but they will keep watching it, she hasn't had that happen again today either. she said it isn't a problem unless she would keep doing it so nothing to worry about right now. she is still on the antibiotic, as well as the dijoxen and capoten for her heart. and the robinul for her secretions is helping alot! but they are still suctioning due to the pnuemonia. they are also giving her the diuretic to help get rid of the fluid in her lungs as well. so we had a very exciting visit this time, and i hope we don't have to do that again! but all is well now. i will update more tomorrow, and here are the new pics.

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Tuesday, April 21, 2009 Today's Visit

Me and Shaina went to see Shailee today, and she is still stable and doing good. She is handling the new heart medication very well, and they switched her to the oral diuretic today as well. There are no changes today. she was very sleepy when we were there today so she wasn't awake much. they checked her liver out because she was on the lipids for so long but everything came back good. she was sucking on her tubes today, not just the tounge motion she wrapped her lips around it this time and was sucking on the tube! so i hope that means that her mouth functions are coming together. other then that there are no changes today. i will update more tomorrow after i get back from seeing her. and i will upload more pictures tomorrow because photobucket isn't working right for some reason.

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Monday, April 20, 2009 My Visit With Shailee Today

We went to see Shailee again today, and she is still doing good. She is up to 66 cc's of formula every 4 hours, and she is still handling her feedings really good. they did a chest x-ray today and her lungs still look a bit hazy, but they are getting better. they switched her to the oral heart medication and stopped the milrinone from the iv drip, and they also switched her to oral antidiuretics, so right now the only thing that she is getting through the iv is the antibiotic, and she has to have that for a total of 10 days and once that is done they are going to take out the pic line and she will not have any iv's at all! the cardiologist said that the heart is looking good and all is going well with the new heart medication. the pediatric surgeon came in today and looked at her belly again and he said that it is looking good. I was there today when the nurse changed the dressing on her belly, and it is down to about the size of a nickle, and it is healing up nicely, so if it keeps going that way then she will only have to have the surgery to close the abdomen wall and they wont have to worry about messing with any of the organs, which is what we want. Shailee was in a much better mood today then she has been in a while, and she was awake for 2 to 2 1/2 hours straight today,which she normally doesn't do. well there really aren't any other updates for today, but there is a new picture.

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Sunday, April 18, 2009 Updates From Our Visit Today

We went to see Shailee today, and she is still doing ok, and is stable. She now weighs 6 pounds 3 ounces, but once again that is including the cast on her leg, but it weighs very little. They are increasing her formula to 63 cc's due to the weight gain as well. She is still on antibiotics but instead of being on 2 she is only on 1 kind. She still has the pnuemonia but it is only in the left lung, and it is improving, but there is a staff infection in the tube that goes into her, but they assured us that it isn't a dangerous type of staff infection and that it isn't the type that gets into your blood, they also said it is very common since the tubes area foriegn body. Her ophalecele is looking great! it is much smaller and the new skin is coming in really well. she is still having alot of secretions but they are hoping the Robinul will work, but it is too soon to tell. They are also canging her over to a different type of heart medication tonight, one that is an oral medication (which she will get through her feeding tube, obviously) but they are starting her on this and taking her off the milrinone that way if all goes well with the new medication she will be able to have the pic line removed once she is done with the antibiotic. it is also another step into getting her home as well because this will be the heart medication that we will learn to give her at home. her vent settings were lowered some today as well because her blood gases came back good this morning, and they are planning to lower the vent a little more tonight before her morning blood gases are taken to see if they are still good. she will have another chest x-ray tomorrow as well as all of her other weekly labs that she gets on monday mornings. they are also planning to do an MRI of her brain eventually, but it isn't anything urgent, just something to get a baseline from about her brain activity and so on. Shailee is also doing better with the gag reflex, she gagged several times today on the stuff in her throat as well as when she is being suctioned!!! every little step with this is a good thing. she is also starting to attempt to try and bring stuff up when it is in her throat, she makes a little cough and trys to clear it out, but not quite enough to do it yet. she was also moving her tounge in a "sucking" motion on her tubes today like newborns do when you pull their bottle out of their mouths before they want to stop eating, so hopefully she will start getting the hang of all these things in the near future. they are still doing the chest therapy on her for the pnuemonia, and they had her laying on her tummy because it seems to help with the secretions a little more. We also talked with one of the doctors today and she said that there is a good chance that the tubes in her throat could cause the vocal chord paralysis, and there is always that chance that it isn't permanant, but she will still have to have the tach and the g tube, and if these things come into play later down the road then that is great! so all in all she is doing well, she is progressing slowly but still progressing which is what matters the most. here are the new pics of her from today.

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Saturday, April 18, 2009 Another Day With Little News

Shailee is still doing ok today, she is stable, and less irritable. She is still tolerating her feedings well, and she is still eating the same amount. She has been dropping her oxygen levels frequently today due to the high number of secretions that she has, so the doctor put her on a new medication to help reduce the secretions. She is now taking Robinul 3 times a day to help with this problem. She is still on the same oxygen settings, and the same heart medications along with the antibiotic. Outside of that there really isn't anything new to post as they are not doing alot with her right now other then letting her rest so she can get rid of the pnuemonia and become more stable. we are going to see her tomorrow so i will update more when we get back and post new pictures.

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Friday, April 17, 2009 Not Alot Of News Today

There hasn't been a whole lot that has changed with Shailee today, she is still stable, and her chest x-rays are still coming up the same. They did do a blood transfusion on her today to get her red blood cell count up, and since they did that her skin is much pinker (she was very pale), and she hasn't been having the bad spells like she was. After they did the transfusion they also gave her LASIK (antidiuretic) so she wouldn't have a fluid over load since she has pnuemonia as well. They are also having her lay with her left side up because she has more fluids in her left lung then the right so it is suppose to help break it up, and they are also doing chest therapy with her as well to help break some of the stuff up in her lungs. they tell me that she is acting much better today after the transfusion and she has been more active, but she is still a bit touchy since she doesn't feel good. they also told me today that they are not looking at surgery for her for at least three more weeks because they want to get her better and make sure she will stay stable before they do it. other then that nothing new has happened today. i will update more tomorrow.

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Thursday, April 16, 2009 Will Things Ever Start Looking Up?

I have been on the phone with Shailee's nurses several times today, and they haven't gave me the best news today. Shailee is still stable and doing ok, but she had to be put on antibiotics today because she has a mild case of phnemonia. She started having her spells again today where she gets very irritable and arches up and then her oxygen and heart levels drop, so they did a blood culture and chest x-ray to come to their diagnosis. her white blood cell count is up which means there is an infection, and her chest x-ray came back a little hazy again. they are going to do another chest x-ray tomorrow to check it out again as well. But they are pretty sure that the antibiotics will clear it all up without any problems, they also think that once it is all cleared up that it is going to result in her having a lower amount of secretions as well, which is a good thing. her temp was also up a bit today, right around 100.2. they decreased the milrinone (heart med) and then took her off of it, but they had to put her back on it due to her being sick so there wasn't extra stress on the heart. the surgeons are also going to stop back by sometime today or tomorrow to look at her omphalecele because they looked at it today and said that it looked more descending (fuller) today then it normally does, so they will be following up soon to check that out and see what is going on, but it could be due to her being up to a full feeding now. So right now they are just letting her rest and not taking any new steps with her until she gets over being sick, but the plan is once she is better to plan her trach and g tube surgery so she can get ready to come home, they also think that there is a chance that once the trach is placed and the paralyzed vocal chords are bypassed that she may be ok to breathe on her own and have rich enough oxygen, but that is something that we wont really know until that time comes, but we can hope for the best. but she will still have to be suctioned since she doesn't have a gag reflex she doesn't know to swallow so the secretions that she does have can enter the windpipe and get into her lungs and she will be vulnerable to get phnemonia more. she may have to come home on heart medication too, but it will be given to her through her g tube. But once again it is something that we are going to have to wait and see what happens when that time comes. I will update more tomorrow as i find things out.

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Wednesday, April 15, 2009 Another Not So Good Day

We went to see Shailee today, and as usual of the few hours that we get to spend with her we spend most of that being bombarded by doctors. Shailee is still stable, and comfy, but the doctors didn't bring us very hopeful news today, but we will get to that in a minute. First of all, her heart echo came back good and the heart function is still improving. they still haven't lowered her heart medications but that is because they want to wait until they figure out when she will go into surgery (i will get to that as well). if she doesn't go to surgery soon they will begin to wean her from the heart medication to see how she does. She is wasn't quite up to a full feeding but is now, she is up to 63cc's and that is where she will stay until she starts gaining more weight. She now weighs 5 pounds 14 onces, but that is including the cast on her leg. Now to the conversation with the doctor today. She came to tell us that they were unable to do the bronch test on Shailee that they planned to do today and the reason was because they couldn't get the tube down there because her vocal chords are paralyzed (both of them) , now this is something that could correct itself later, but then there is always the chance that it won't. her vocal chords are stuck in a closed position so that stops her from breathing properly, swallowing, and it can cause her to have aspiration issues as well. Also they told us today something that we never knew that i think they should have told us from day one, but of course not, apparently, as we know she can breathe on her own, BUT it isn't effective enough for her to do it soley on her own (due to the vocal chords) so there is a good chance that she will have to come home on a respirator as well. But they said that within 5 min of the oxygen tube being out she turns blue. They also said due to the vocal chords she will have to have a trach put in as well as the g tube. the trach will be used for her breathing (either with the respirator or not depending on what she needs) as well as for suctioning her secretions out to keep her oxygen levels mantained. the g tube will be for feeding her. We have no idea if she will ever be able to talk or not, so we will have to wait and see what life brings her later down the road. they said that they will do the trach and the g tube at the same time and then they will have to do a later surgery to close off the omphalcele on her belly. But like i said before there is always a chance that this will fix itself, but there really is no way to tell right now. I guess what i don't understand is why they can't get the bronch tube down because of the vocal chords being paralyzed in a closed position, but they can get the other tubes in her throat, don't they have to go between them as well???? so i am going to have to ask the doctor about that, of course i never think of these things when they are right in front of me. What we are really sick of hearing is when all these doctors say she IS going to be severly retarded, yes that is what they say, but in reality of it all they DON'T really know if she will be severe or mild! Then the doctor today asked us how aggressivly we wanted them to care for her, so basically do we want them to do the surgery for the trach and g tube or do we just want to let it go and if she lives then great and if not then she dies! MANY of the cri du chat children i have learned about or talked to their parents, well i have learned that most of them don't thrive until later years like 3 to 5 years old, so why shouldn't my daughter have that same chance to see how she will thrive or not thrive?? doesn't she deserve a chance too? just like the doctor told me today that most of these kids only live to their 20's, well many of them live to be much older! i have talked to several parents who's children are in their 30's and 40's!! It is just so hard to only hear the negative side of everything from them on a daily basis. I understand they are trying to be real and prepare us for what COULD happen, but in reality they DON'T know what is going to happen. God is the only person that knows what is in store for little Shailee, and no one else will know until we get there, but i DO know that we are going to give Shailee every chance that she can to have a good life, and just like i told one of the doctors today "Shailee is going to be how ever she is going to be and no one can change that" It doesn't matter because we are all going to love her just the same, and yes she is going to need alot of care but she will have whatever it is that she needs to reach her full potential because she deserves it just like any other child. Sorry for rambling, it has just been a rough day. here are some new pics of her from today, but she was very tired and just wanted to sleep since she had all the tests done today. I will update more tomorrow.

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Tuesday, April 14, 2009 Shailee's Updates For Today

Shailee is still stable and doing well. She is up to a full feeding now (a little over 2 ounces) so that is great news! The heart doctor came and looked at her today and scheduled another heart echo to look at the heart function before he decides if it is ok to lower the heart medications. They are doing a bronch exam on her tomorrow to look at her airways and her throat to help determine if she is going to need a trach or not. they attempted to gag her today, but there was no luck. Her oxygen levels are still pretty low, they are between 22% and 23% today, which is still way better then 50%. the LNP called me today with the results from Shailee's EEG, and she said that there was no sign of seizure activity so they are ruling that out which was great news to hear. Other then that there really haven't been any changes, but we are going to see her tomorrow so i will update more after we see her, and of course there will be new pics.

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Monday, April 13, 2009 A Few Changes For Today

Shailee is doing better today, she is back down to 21% oxygen which is way better then yesterday. The EEG still hasn't been read so we don't know about the seizures yet, but i should be able to find out about the test results sometime tomorrow. Shailee hasn't has an antidiuretic today, and she is still having secretions, but not as bad. they feel that that she may be having so many secretions due to irritation from the tubes in her throat. Her labs today have looked good so far, and in a couple of days they will be doing a follow up kidney and bladder x-ray to make sure they are still looking good. She was recasted (third time) today and her foot is still looking good. she is also up to 49cc's of formula every 8 hours, and they have stopped the tpn and lipids through the iv so she is getting all her nourishment from the formula now! she still has the iv in though and they wont pull it until she is eating a little over 2 ounces of formula per feeding. she does still have clear iv fluid running in her slowly but it is because she has the heart medication that she gets in the iv and it is less then a half of a cc so they have to have fluids running so her pic line doesn't clot up or they would have to start poking her all the time again. Her heart doctor was there today and they are talking about lowering the dosage of the heart medication to see how she will do with it, so if they do, lets pray that she does well with the lower dose. her surgeon also looked at her belly today and said that it still is healing well. other then that she hasn't been doing much, she has stayed stable today and didn't have anymore spells today, and she has been much less irritable. I will update more again tomorrow.

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Sunday, April 12, 2009 There Has To Be Some Steps Backward

Shailee had a rough night last night and day today. She was having these "spells" and was very irritable so they had to sedate her to get her to rest. they think that she may be having siezures, so they are going to do an ECG on her tomorrow to see if that may be the case. they also had to adjust her et tube (repirator) and turn her oxygen back up to 50% because her secretions were so bad they were suctioning her every 15 minutes, so they had to give her an antidiuretic to help get rid of some of the fluids, which as of the last phone called really seemed to be helping because she hadn't been suctioned in over an hour. the thing is that they are not sure where all these secretions are coming from so they are checking into that as well. her last chest x-ray looked hazy so they are also going to be doing one of them tomorrow as well to look at it again. she is up to 43 cc's of formula every 8 hours now, and hse will also be having her cast soaked off tonight and number 3 put on tomorrow by the pediatric surgeons. So she has had a rough day but when we last talked to them she was stable and resting from all the excitement, so hopefully she will have a good night and get some sleep. I will update more tomorrow when i find out more.

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Saturday, April 11, 2009 Our Visit To See Shailee

We went to see Shailee today, and she is still doing good. They haven't changed any of her medications. She is up to 37 cc's of formula every 8 hours now, and they are still slowly weaning her off of the iv nutrition as well. Her belly is still healing well, and her heart rate and oxygen levels are staying pretty steady as well. We took her her very first Easter Bunny today as well. They moved her into a different room again, but she is just one room down from where she was. She had a pretty easy day today, she didn't have any lab work done, so she had a little break. There really aren't any other updates for today, but there are some new pics, and she is yawning in one (she just ate and was sleepy).

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Friday, April 10, 2009 Today's Updates

I talked with the nurses today as well as one of the doctors. Shailee is up to 31 cc's of formula every 8 hours now, and they are still uping her formula the same as they were. And for my mom, who keeps asking me how many cc's are in an ounce, well the answer is 30 cc's is 1 ounce so she is having 1 ounce and 1 cc every 8 hours. which isn't much but it is a start. Shailee has also gained 1/2 an ounce, which once again isn't much but it is better then losing more weight. They told me that all of her lab work is still coming back good. her heart echo results weren't in yet, but they told me that everything must have looked good or they would have changed something or ordered something else, which they didn't do, so i guess no news is good news in this case. I was also told that they drew more blood for chromosome testing because they are doing something called a microaray (not sure on spelling) but she told me that they are basically looking at things on the next level to see if they can find out more information on what the "unknown'' addition is on her 5th chromosome and to make sure that there isn't any other syndromes on top of the cri du chat or to see if they will be able to tell if there could be any other problems that she will face from this. so now we have to sit and wait a couple more weeks just to sit down with the geneticist again so he can give me more bad news, but i guess we will see what he has to say when that time comes. Other then that information there really isn't anything else new on shailee today, but we are going to see her tomorrow eavning so i should have more updates as well as new pics.

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Thursday, April 9, 2009 Nothing Too Exciting Today

I have spoke with the nurses several times today, and not much has changed with Shailee today. She is up to 25 cc's of formula every 8 hours now, and they are going to continue to up her formula 2 cc's every 8 hours, so 6 cc's more every 24 hours! she is still doing great with the formula as well. Shailee had another heart echo done today (even though they said they weren't doing another for a couple weeks, suprise!) but the results wont be back until sometime tomorrow. She is also going to be having a follow up head ultrsound in the next few days to make sure that everything still looks good with her brain as well. Also another one that gets me is the geneticist who told me that he wasn't going to check her again until she was 6 months (if she makes it that far according to him), well guess what? they drew more blood today for further chromosome analysis!!?? I am not sure what that is all about, but i will be calling their office tomorrow to see if i can find anything out about that. But other then that stuff nothing else has changed, she is still doing good, and she is still stable. they just keep telling me that they are taking things slow with her and it is a slow process and so on, so basically more waiting. I will update more about her tomorrow.

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Donation Site

We have found a website where donations can be made to us via paypal. We will still get a p.o. box as soon as we can, but for the time being you can use the following site to make donations over the internet. if you have any question feel free to email me.

http://www.digitalcharity.com/m.php?id=68909

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Wednesday, April 8, 2009 Our Visit Today As Well As More News

We went to see baby Shailee today, and all in all she is doing good. They raised her formula again she was taking 18 cc's earlier but they were putting her on 20cc's every 4 hours starting at 4 pm today. She is still doing well with the formula which is a good thing. She is still pottying good and without the aid of a supository. She is still on her respirator due to her high level of secretions as well as the fact that she can't swallow. She is still out of her icolete and in a more normal bed that isn't completley closed in, and she was still in clothes today as well. She woke up for about 45 minutes today so we got to play with her a little, then they gave her some food and she was out like a light. Sister Maxine Young came down and did a sickness blessing on our little girl with us today as well. I spoke with one of the doctors today and health wise she is improving great. the surgeons looked at her foot today and it is coming along good. they got the lab work back for her hormones and her cortizon is still good, her thyroid and growth hormone also came back normal this time as well (thank god) and he will do a recheck on them again in 2 months. Her heart function is still improving and her vsd and asd (the 2 holes in the top and bottom of her heart) are getting smaller so they still feel that they are going to close on their own. they have also lowered the iv fluids that she was getting for nourishment as they are uping the formula intake. as far as her gag and swallowing she still hasn't developed those but they are still waiting until she reaches when she was suppose to be due to see if they will come along, and if they don't they will do some oral therapy to see if they can help it along and if that doesn't work then they will have to put in a g tube in her belly for feeding. but their goal right now is to wean her off the iv fluids and have her only on formula. We also met with the geneticist today, and i must say that i am not all that happy with what he had to tell us, but to a point i was very prepared for how he would put things as i have been told that they always give the worst case scenario so i expected it but it is still very hard to stomach. We found out that Shailee is falling into a category that only three other children have fallen into and of those three only 2 has the same chromosome make up as her so there really is no way to tell how all this will end up for her, but she is going to be loved no matter what. Shailee does have the deletion of 5p (she is missing part of chromosome 5) but on top of that she also has an unknown addition to 5p (she has an addition of genetic material that they don't know where it came from on chromosome 5) so what she is actually called (in terms of her syndrome) is Mosaic Cri-Du-Chat Syndrome, which is more rare then the regular form. Leave it to my daughter to have to be even more unique. The geneticist of course said the usual, "her prognosis isn't good", "she can have severe mental retardation", "she probably will not talk", "she may not walk and if she does it could be as late as 5 to 6 years old", and "if she is still well they will check her chromosomes again in 6 months". So pretty much if she is still alive in 6 months they will check her again, but i am taking what he said with a grain of salt because Shailee is already showing signs above the normal for her syndrome, so we are not going to give up hope because there is always hope in some form. they also want to do chromosome studies on us as well, even though the said "this isn't because of anything you two did" follwed by '' if the father shows this or the mother shows that then it would have come from them". either way it isn't going to change nor make my daughter better so why single one of us out like that?? So now we are just back to waiting to see how things turn out for her, and only time will tell how mild or severe her problems will end up being, but all that matters is that she has alot of people that love here and nothing will change that. I will update on her again tomorrow, and here are her pics from today.

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Tuesday, April 7, 2009 An Uneventful Day

I spoke with Shailee's nurses several times today, and there really isn't much to update on today. They have uped Shailee's formula to 12 cc's every 4 hours instead of 5 cc's and she is still doing really good with it. She didn't have any labs or tests done today so she pretty much had a day of rest. She was still out in the crib today, and the nurse said she spent most of her day looking around and checking everything out, and cat napping. We will be meeting with her geneticist tomorrow so hopefully i will know a lot more about her then, and lets all pray for good news with no more suprises because i don't know how many more suprises i can take. I will update more on Shailee tomorrow after we get back from visiting her.

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Tuesday, April 7, 2009 Our Family

I have had alot of people ask about our family and wanting to know a little about us. Well I am the mom, Stacy, and my husband is Bill. I am 25 and Bill is 39. We have a total of 7 children (2 of them we currently don't see). My children (before me and Bill) are Austin age 9 (will be 10 April 20th), and Chase age 6 (will be 7 April 13th), then my children (with bill) are Shailyn age 1 (will be 2 May 14th), and Shailee age 1 week 6 day (but you know all about her), Then there is my step daughter who is her with us quite often and her name is Shaina age 16. My husband works full time (actually over full time more like 50+ hours a week) and he is also a full time college student studying for degrees in human services as well as criminal justice. I am a full time college student studying to be an RN (registered nurse) and a full time mom. I am also an ovarian cancer survivor of almost 2 years now, which is one more reason that out little Shailee is a special blessing because we were told i only had a one in a million chance to get pregnant again! Both of the boys play baseball (which is just getting started again) and they are in 3rd grade and Kindergaten. My 6 year old is a challange for us at times as well as he is adhd and bipolar, but his symptoms are pretty well under control these days, but he still has his bad days just like we all do. My 1 year old, well, she is your typical toddler, into everything, and wants to be a part of everything! My step daughter, well she is just awesome! She helps us out alot with the kids and taking care of things since Shailee is in the hospital, we are lucky to have such a great person in our lives. We are a very low income family, but we do our best to find ways to make it work the best we can, and i have also had several people ask if they can send us donations to help in this time with medical expenses for Shailee and travel costs so we can be with her more, and we are working on getting a p.o. box so we can make that happen, and i will post when we have reached that point and time. We all want to thank everyone for their kind words, prayers, offers, and support. for those of you who don't have my email if you ever have any questions or would lust like to contact me feel more than free to email me at stacyloaks@yahoo.com and i will reply as soon as i have the chance. I am adding some pics of me and my hubby as well as the kids so you can get to know our family more. We may not have much but at the end of each day we have each other which is something that money can never buy. Thank you everyone, and I will be updating on little Shailee later today.

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Monday, April 6, 2009 Another Day And More Waiting

I didn't get to go see my little girl today, but i have been on the phone with the nurse checking on her 4 different time today already. Shailee has been having a good day, she is still stable. I wish i could be there to see her today, the nurse has her out of her isolete and in a crib, but she has clothes on her today and a blanket, but she is hoping that she will be able to be out Wednesday when we go up too. we are still unable to hold her but that is because if they have her propped up she gets more secretions in her throat and it will affect her oxygen and heart rate :( they are still suctioning her regulary to keep her airways clear, and that is because she doesn't swallow. They told me today that she does have a gag but not enough of one yet, and the swallowing usually follows the gag so they are hoping that as she gets closer to her due date, which is April 18th that she will begin to develop these things, but once again, we will have to wait and see. they started giving her formula via the feeding tube last night and she is doing great with it so far, she isn't getting much, only 5 cc's every 4 hours but it is enough to see how her body is going to handle it. Shailee was recasted today and they said that her club foot is looking really good so they repositioned it and recasted it for another week and then they will do it all over again until it is either fixed or it isn't working anymore. i pray that this will work and she wont have to go through anything else with it. I tried to get the info from the final report on the chromosomes but the nurse was unable to understand it so she had me contact the geneticist's office to set up a meeting with him to find out what was going on, and they told me that they couldn't get me in until May 1st! my heart sank because i really want to know now, but the nurse called me back and she was able to get in touch with him for me and let him know that i want to know all the info and they are going to call him first thing when we get there wednesday and hopefully he will be able to come and sit down with us and catch us up. Shailee also had another thyroid test done today but the results are not back in yet, but the nurse told me that if they have abnormal findings that they generally call them in to the nurses and they haven't heard anything, so i am hoping that no news is good news in this case. Well that is about all on Shailee today, i will update on her again tomorrow, and hopefully Wednesday night i will have more information on her chromosomes and if the cri du chat is the only thing she has or if there could be other problems as well. I am now off to do what i am doing best these days, waiting.

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Sunday, April 5, 2009 Another Visit And More Unwanted News

We went to see Shailee today, she was still stable, which is what we want. Shailee is still intubated (breathing tube down her throat). She didn't get any lab work done today, they are waiting until Monday to do her chest x-ray, ekg, and all the other blood work they do. The pediatric surgeon gave the ok to give Shailee a little formula in her feeding tube tomorrow to see how she will handle it, so hopefully everything will remain ok and she will finally get to try it out.
We met with Shailee's endocrinologist for the first time today, to find out that they are concerned with Shailee's pituitary gland and its ability to produce her body's hormones. He feels that she may have a pituitary deficency. He told us that her Cortisol levels are good, but her thyroid levels are low, and her growth hormone levels are low (they should be between 20 and 40 and hers was 6). He wouldn't give us alot of information at this time b/c there is nothing set in stone with this since she isn't feeding on her own yet and she is getting all of her nourishment from an iv. he is going to do another thyroid level tomorrow, but he will follow her more closely once she is feeding on her own and they are able to see what all her body can do on its own. We were very upset at the intial news of this, but once I got home and did alot of research on this problem i have found that all the deficencies that are or can be caused from this are treatable in one way or another. I just hope that it doesn't turn out to be something that she is going to have to deal with later down the road but it is another time where all i can say is that we will have to wait and see. I really am starting to feel like all i get done doing is waiting and waiting, and it is hard b/c there is nothing that i can do about it, or for our daughter but sit and wait. Right now the main things they are worried about getting taken care of first are her heart and her respiratory issues so she can be off of the ventilator and breathing completley on her own. That is pretty much all there is for today, so now i sit and wait since that is all that i can do. I will update again as soon as i hear more. Here is a new pic of Shailee from today.

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Saturday, April 4, 2009 My Visit To See Shailee

I went and spent a few hours with Shailee today. She is still doing good and is stable. Once again she was unable to have formula today due to her dijoxen levels being too high, but they are going to lower the amount of her heart med to correct that and maybe try tomorrow for the formula. They dropped her respirator from level 40 to level 35 and she is still breathing at 21% (room air, like us). Her blood gases were still coming back good today as well. They are suctioning secretions from her throat about every 2 hours, which they said is because she has the tubes in her throat so she is unable to clear it out on her own. She has lost a total of 8 oz. since she has been there so she is down to 5 lbs. 1 oz. Shailee stayed awake for about an hour while i was there and was being very active just moving her arms, head, and leg around (she can only move on due to the cast on her left leg but she does wiggle those toes). She is still intubated right now, and they are hoping to remove it soon and put the oxygen tube back in her nose but the heart doctor wasn't ready to pull it just yet. She is having a chest x-ray done tomorrow to make sure that there is no aspirations (or fluid in the lungs), her last chest x-ray came back fine with no signs of fluids, swelling, or infections of any kind. Shailee will also be having another ekg done tomorrow to see how her heart is progressing. Here is a new pic that i took of her today, it isn't the best but it was what i could get of her since she is in a plastic "house" right now. But she did have her eyes open in the pic which is a new one for us.

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Friday, April 3, 2009 Another Update For Today

I know i updated already, but i just got off the phone with the hospital and i just had to post this stuff now. Shailee is still doing good. The nurse told me that Shailee DOES GAG!! she gagged 3 times on the suction tube today! They said that they don't know if it is going to be an effective gag or not but we should know for sure in a month tops. they also told me that they found that she has a dual pelvis but they said that it isn't anything to worry about and it isn't going to hurt anything, basically she has a pelvis bone on top of another one, just one more way she is unique. they gave her the suppository and she did poo!! so they are going to give her a little formula tomorrow through her feeding tube!! they got the results back from her heart echo and they said that everything still looks good even with her respirator being at 21% which is the same as room air. so when they check her blood gases tomorrow morning, if they are still good they will be removing the intubation tube from her mouth ans replacing the one in her nose instead. Well that is really all for today, but i am sure there will be more tomorrow when i get home from visiting my little Shailee.

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Friday, April 3, 2009 A Couple Updates

We called the hospital and checked on Shailee today. There really isn't a whole lot of new news but her respirator levels have been dropped twice today, and her blood gases are looking good. They are going to check them again in the morning and if they are still looking good they might take the respirator tube out of her throat and put the one back in her nose. Which i think will make her alot happier and more comfortable. Her kindey echo came back and everything there looks good there, and she is still peeing like normal. They are talking about giving her a supository because she hasn't had a bowel movement in a while, and they are still talking about trying some formula on her to see how she will handle it. Other then that she is still doing the same, she is stable and progressing slowly. I am going to see her tomorrow, so hopefully i will have more news.

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Thursday, April 2, 2009 You Take The Good With The Bad

We went to see Shailee today. She seemed very uncomfortable today but i think it is because they intubated her again (put the oxygen tube down her throat) which they had to do because her blood gases were still too low. But she had her tounge hanging out and was messing with the tube most of the time, and when i said something about her tounge the nurse that was on duty (one i have never met until today) was very short and rude and tried to tell me that it was part of her syndrome but i have never seen or heard anything about the tounge hanging out of their mouths like that, and i have done much research. And maybe it will be a thing for her, but i just find it odd that in all the pics i have she only has her tounge out in the ones that she has the oxygen tube down her throat so i am hoping that is the only reason why, i just really feel the nurse could have been a little nicer about my concerns instead of being so rude. The nurse also told me very bluntly i might add, that Shailee can't swallow! Later the CNP stopped by and talked to us about Shailee and i asked her about her not being able to swallow and she said that she just doesn't seem to have a gag reflex and she doesn't swallow well, but they don't know if it is permanent or not, so it is another thing that time will only tell, so something else to play the waiting game with. We also saw the orthopedic surgeon today as well and he told us that her belly is still healing well and that as long as that doesn't change they wont worry about the reconstructive surgery for as long as a year to two years. Right now the heart is the most important thing to get passed, and she is having another heart echo tomorrow so they will know more once that one is done. Shailee was also very active today just moving her arms and legs (well leg since one is in a cast) all over the place. She was opening her eyes alot today as well, and she isn't looking as yellow as she did a couple of days ago. All we can do is to take things one day at a time, and we will take the good with the bad, but she is still hanging in strong and i just know she is going to make it out of this sometime.

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Wednesday, April 1,2009 A Few New Changes

We didn't get to visit today since hubby is sick, and i had a c section and can't drive, not to mention it is an hour and a half drive from home, and we have three other small children at home to tend to as well.....wow things are truly all over the map right now. But i have called and checked in on Shailee several times today (which i do everyday, no matter what). They told me that she is still stable and doing good. She did have another heart echo today as well as a kidney echo but we wont know about them for a day or two. they heart doctor changed her heart medication to something that he feels will be better for her. Her blood gases were a little low today but could just be because of the medication change. they are talking about possibly giving her some formula tomorrow via a feeding tube to see how she will handle it but it will al depend on how she is doing tomorrow. But all in all she is still doing ok which is all that matters right now.

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Monday, March 30, 2009 Finally A Little Hope

We went to see Shailee today. She is still stable and doing well. She was a little jaundice today, but nothing out of the normal. Her belly is healing very well, they had her foot casted today when we got there, they are starting to correct the club foot. She will get a new cast every week until it is better, and they feel it is only going to take 2 to 3 castings to correct her foot. She did have a heart flutter today which put her heart rate in the 280's but she corrected it herself and went right back to normal within seconds. The chaplin at the hospital came and did a blessing on Shailee as well. The best news of the day was when her doctor came in to talk to us about the chromosome tests that they did. they still don't have the final report but they do have a diagnosis, and it ISN'T trisomy 13 or 18 like they had thought in the begining. Shailee is missing part of chromosome number 5, which is called Cri-Du-Chat Syndrome (french for cry of the cat). This is a very rare syndrome, turns out it only effects 1 in 50,000 children, but the good news is that she is going to be ok. Shailee could face a number of problems in her life such as mental retardation (i really don't like that word lets say metal handicaps), developmental delays, and many other things, but the main thing is that she is going to have a life. There really is no way to tell how mild or severe things will be for her right now, we will see as we go. Now the doctors are going to start really working on her problems and getting things corrected. We are just so happy that she is going to be with us for a long time.

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