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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