My beautiful girl!!!

Test results

Well Miss Brooklyn had her profusion scan & it went very well!!! She was getting 31% to one side and 69% to the other lung. The cardiologist informed us that she is border line, but wont need a cardiac cath. unless she goes below 25% so this was great news. Brooklyn had the VPI test done this month also and we discovered that there is a possibility she will need the surgery in the future but her speech needs to progress a little bit more to make sure that it will be beneficial for her. She was a little concerned about the lack of muscle in the back of the throat & her nasal regurgitation & wants her to get intense speech therapy. We have been able to wean her off of her oxygen during the day and she is satting at 89%, but she still has frequent desats at night and is still on 1/2 a litter of oxygen during naps and bed time. Looking into getting a sleep study because she is having some minor apnea episodes. She has also started having severe nose bleeds I think do to the dry climate and oxygen drying her nasal passages, so we will be looking into getting a humidifier for her oxygen. Otherwise she has been health and happy and will be turning 3 on July 9th!!! We are so excited to be celebrating this milestone!!

March 2011

Well Brookie came in contact with some bug during her hospitalization in February for the tummy bug that resulted in numerous seizures. I took her to the doctor for what began as cough, runny nose, and a fever. After a week of being on antibiotics that her body has built up a tolerance to, she was doing much worse. This resulted in us taking her to the ER after her vomiting her medications for her heart, low blood calcium, and seizures. We have learned that if she is ill and misses a dose of her seizure meds then she will in most cases have break through seizures. We stayed over 24 hours in the ER observation running flu, RSV, and other bad respiratory viral screenings, and having a chest x-ray that all told us nothing. She could not maintain a safe oxygen level and was only able to keep herself around 70% on room air. The doctors put her on a liter of oxygen to help her breathe better. We were admitted to the hospital and they did nothing but keep her on oxygen for the next 3 days, every time they tried to wean her down she was working very hard to breathe and was only maintaining a oxygen level in mid to high 80's. The pulmonoligist ordered for another x-ray to determine if she possibly had pneumonia or bronchitis that was causing her to have breathing difficulties. The next day we found out that this was a POSSIBLE case of pneumonia but they were not certain. They started her on another round of stronger antibiotics and finally got her down to 1/2 a liter of O2, so that we were able to leave the hospital on day 5 to go home and be with my other 2 children. Brookie has been out of the hospital almost 2 weeks and is still requiring the oxygen due to our higher elevation in the mountains. I have tried to wean her down and we have had several times where she now has blue spells. We now are going to have a profusion scan because her cardiologist says there is a possibility that her heart may not be pumping equal amounts of blood to each lung. Also we are having a VPI test to determine if there is still an issue with her having a micro aspiration whenever she drinks by mouth due to an abnormality of her pharygeal flap not closing and liquids coming out of her nose on some occasions & her breathing them into her lungs.

Tummy bug & seizures

Feburary 2011 Brooklyn had a cardiology appointment at UNM hospital where she came into contact with the tummy Bug germ. She had a fever, vomiting, and diarrhea for several days which resulted in her not keeping her anti seizure meds down. We took her in to the ER and after having tried about 6 times to start an IV with no success they decided to give her oral meds and hope that she kept them down. After watching her for several hours they decided that she was able to go home. The next day she was very lethargic and wouldn't eat or drink anything. Whenever I was putting her into bed she began having seizure. We were driving to the hospital and decided to call for an ambulance a couple of miles from the house. After getting her into the ambulance she began having another seizure her oxygen sats dropped very low and they had to bag her back up until the seizure was over about 3 & 1/2 min. They gave her valum to relax her muscles so that if she had another seizure her air way would stay open. We arrived in the ER and they got an IV in and we were waiting to be admitted she had another seizure. This time they gave her a high dose of adaban to stop the seizures. When we finally got up stairs at 4:00am they decided to draw blood to do labs. Every time that they touched her she would have seizures one right after another, lasting until about 6:00am. The doctor came in and decided to hive her more adaban to get the seizures stopped again and put her on 15 liters of blow by oxygen to get her sats back up . Later on during the day she was having "staring spells" And the doctor feared that this was going to result in her having more seizures so decided to give more adaban. After having an EEG they decided that she could have a bath. When we were trying to bathe her she had no muscle tone at all and couldnt even hold her head up. We later found out this was due to the neurological team more than doubling her baseline dose of Keppra (her home anti convulsion meds). After a couple of days in the hospital she began feeling much better and neurology decided that she would be okay on her baseline dose of keppra & send her home. After being home for a couple of days she now has some kind of upper respiratory infection.

update

I haven't updated in quite a while, as things are chaos around my house on a daily basis. Having two very busy toddlers leaves for very little time to sit in front of the computer and blog!! But hey No news is good news, because seems like the only time I am blogging is when we are in the hospital with some kind of ailment. Brooklyn is doing absolutely wonderful and hasn't been ill in over 6 months!!! This is amazing to us!! Now to just make it through flu season!! Her developmental progress is coming along slowly but surely!! With the help of multiple speech and OT therapy sessions a month. She is walking and running around everywhere, and getting into every thing she can!! Her speech is still very delayed do to poor muscle control, but she does very well communicating to us with sign language!! She has a very good sign vocabulary of about 50 words or more and is starting to use multiple signs together to communicate what she needs!! Such as "want more candy"(one of her favorites!!) and "cry baby"(don't know where she picked this one up?) She is growing so fast!! Still her baby sister is as big as she is actually bigger by a few pounds, and they often get mistaken for twins. The girls are 14 months apart but Brook is still very small for her age. She hasn't ever measured out of the 5th percentile. We are very proud of our little miracle baby and are enjoying every day of watching her grow and learn new things!!!

Home

Finally home from the hospital!!!!!! We were released yesterday. I had a good rest last night and did some much needed house cleaning today (as much as I could running from room to room so as not to leave Brookie alone by her self, because I am now paranoid again) Before these seizures it had been since the mid to end of last year since she had any seizures. I had started to relax and take for granted that her seizures were under control. I am now absolutely terrified that she is going to start having more. She is doing much better today she was still tired, but she did play a little bit. Her Echo cardiogram and EKG went very well and they said that she would not need to be seen for another 6 months!!! She was also followed by all of her other specialist while in the hospital and they all seemed to be happy with how she is doing!!! I want to say again thanks so much to everyone who prayed for our baby girl!!

more testing!!!!!!!!

We are still in the hospital, but are definitely going to be released tomorrow!!! The swallow study went great!! The hearing screening was a little concerning for me but the audiologist said that she wasn't worried a great deal about her hearing, and commented that she did only respond to the higher range of the spectrum and that could be caused by slight hearing loss. Brook was very distracted and we are going to repeat it again in 1-3 months. We have an Echo cardiogram and a EKG scheduled in the morning, then we should be free to go!!! I can't wait to go home and catch up on some MUCH needed rest!!!!!!!! Many thanks to every one for your prayers!!! The Biggest thanks to Alisha for all of the goodies!!! Much appreciation for my mommy and Two older sisters who helped out so much with my other kiddos!!!!