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Thursday, February 21, 2013

Schools coming....

Brielle has been fighting a cold for the past 2.5 weeks. I had her in the doctor last Monday and he did a chest Xray just because Brielle is Brielle and things can change so fast on her. That they can! He sent us on our way with a "Just a virus" and come back in a week if not better. As usual, we were back in a week this last Monday. This time, the Virus turned into an ear infection, sinus infection and a "mucousy sounding spot in her right lung thats not YET pneumonia." She was put on Augmentin, Zyrtec, Flonaise, and Albuterol every 2-4 hours as needed. This child HATES taking medicine with a passion!! Who can blame her! But oye! It is a fight to say the least! Tuesday she woke up and she was retracting so bad and wheezing so hard I could hear her in the other room! I gave her 2 puffs of albuterol and a rescue dose 15 minutes later which did nothing. After an hour she was still retracting and her therapist showed up. I expressed my concern to Lisa and she said she could see her retracting thru her shirt and up into her throat it was that bad. Lisa thought she looked the worst shes seen in the past 2.5 years we have known each other and was "hospital bound".  So I called the doctor and spoke to a nurse who read Dr Krainiks notes and said he put her on the Augmentin assuming that spot would turn into pneumonia. Because thats how Brielle is! Fine one day, horrible the next! She said that is sounds like it definately turned into pneumonia and if it is, even if we brought her back in all they would do is an xray to confirm and keep her on the same meds. So thats what we have been battling for the past 2 weeks! And the last 4-5 days Tayvah has had a runny icky nose and fighting taking her bottles. I can tell she doesnt feel good either. Shes been a crab apple and just wants to sleep ALOT more than her norm.

Brielles biggest accomplishment in the last week....I had the foot stool up on the couch, she has been obsessed with sitting on it for some reason lately. She grab on and was attempting to bring her leg up. It took her a few tries and I kept encouraging her to O try again, Keep it up, Raise it alittle higher and all the sudden she was UP! I made a big stink about and danced around and shouted "YOU DID IT!!!!" And she was so proud of herself she was shaking her little fists in the air yelling "I DID IT!" And then she had to do it 2 more times! This seems like such a small feat for most, but she has needed help getting up into any chair, bed, highchair, couch, etc her whole life and to do it all by herself was a huge deal to her! Granted it helped that she had the space between two peices of the stool to anchor her hands and pull, but hey she did it and was so proud! She has been little miss independent lately, which is great, but also means more meltdowns when she cant do something she knows she should or can do!

Today I met with 5 people to talk about Brielles option after her 3rd birthday. 3!!! Where in the world has the past 3 years gone!!  When Brielle turns 3 years old in June, she looses all her benefits thru the birth to 3 program that she is in now. So I need to find outside therapys to work with her. I was a nervous wreck and still not sure how I feel about sending her to school. I feel alittle bit better after meeting with them and asking a million questions, but Im so not ready. They could tell and told me I have til Fall to transition myself. I felt alittle dumb to have tears in my eyes, but everything she has gone thru and still going thru, I just feel the need to shelter her and protect her from the mean world. never going to happen, I know, but its just my quirky thinking. We got to meet her teacher, Mrs Krissy, the board member Mrs Franklin and then Brielles current PT Lisa, OT Mary Ann, and current teacher Jenni. The 3 therapists described what they are doing for Brielle currently and what they feel she will need help with in school. Some of the concerns we have that she should be doing as an average 2 year old is Taking on and off her coat by herself. undressing herself, potty training, stairs, climbing on furniture etc.  I asked her teacher what types of things will they be doing with her since she will be getting Physical, Occupational, and speech in school. She said they she would be put in a preschool like setting. There they will be coloring and doing art projects, singing and dancing, reading, small field trips etc. She will even have a little backpack of her own :) Everything like a normal school aged child would do but she will just be getting help with it. She said that she will ride the short bus and they come right to my house in my driveway and I put her on the bus in her carseat and I get her off. Her teacher and the aide will get her on and off at the school. She will go 2 days a week for 2 1/2 hours. I believe deep down in my heart she will LOVE school! I will adjust. I will probably love my 3 hours off a day with Tayvah. :) Ive wanted nothing more for her to be normal and average and do what every other child is doing. This is her chance. She will do great and she will love it! And Mom will learn to love it too :)

Monday, February 4, 2013

Reflux meds work!

Tayvah is better! I ended up talking to the girls pediatricians wife (I see her at the NICU I volunteer at) and talked to her about what was going on and she said that her youngest had reflux and it was bad! So I took her in almost 2 weeks ago and she was put on Zantec. It is helping some. She still gets in her crabby spurts tho. Not as many, but some. I have noticed that her crabby spurts come when she is over stiumlated. Ex. Basketball games (Which Brielle LOVES to go watch her auntie Kaila kick butt at!), family partys that are noisey, or just an over all busy day that she is in and out. She is VERY much a baby that likes to just lay and play with her toys and not be handled alot. Total opposite of Brielle. She loves her jumperoo, she loves to lay on her belly and reach for toys and roll over and just lay and coo. She is much like Brielle in the sense that she does not want to be rocked to sleep. And when shes ready for bed, she lets you know! And you better just put her in the bottom right hand corner with her head tight up against her bumper with her face facing the wall and her thumb in her mouth. Thats how she sleeps each and every night. Both of my kids are very much Crib sleepers. They dont sleep well anywhere else. Its healthier to have that (so the experts say) but it can be a pain when you are out and about and they are tired.

Today is Tayvahs 4 month check up! Holy man! Where did the time go??? I feel like I had her a month ago! She is growing so fast I can hardly believe it. 4 months until Brielle is 3! Oye!

Brielle is weighing in at 22lbs 4oz and 34". Tayvah is weighing at 13lbs 11oz and 17 1/2". Grow babies grow! On second thought, SLOW DOWN!!

I just signed the papers to enroll Brielle into the early childhood program at Hortonville School. When Brielle turns 3 in 4 short months, she looses all her therapists. I will have to bring her to the Depere clinic she gets botox at currently. But early childhood will also benefit her if she qualifies. I hope she does. But I cant believe I am even to the stage of signing her up for school. I feel like we just signed her discharge papers from the NICU to bring her home. Now Im signing papers to send her off to school. Time needs to stand still for awhile.

Brielles botox isnt working as well this time. Her therapist is entertaining the idea of Phenol instead. Phenol is a deeper injection right to the site of the problem. She will be put to sleep for that procedure. NOT a fan of phenol! I will have to ask Dr Morberg her opinions on it and go from there. I just dont know. I had to go in to a "interview" to talk to a neurologist to see if they consider Brielle disabled or not to keep getting medicaid. While answering all the questions and describing the things she cant do that a normal 2 year old does was somewhat depressing. She cant climb stairs or do down them unless she does them like a 1 year old. She cant climb up on the couch or a chair. She is still in a crib with no end in sight as of now. She cant climb up a stool on her own to sit on the big girl potty. She cant run. She cant walk on an uneven surface without falling. She cant take off her own clothes (mainly her shirt and socks). She cant open a door. She cant push herself with her feet on a riding toy or wheel the pedals of a bike. I know to most they sound like petty things. But in the real world she is pretty behind. Some 1 1/2 year olds are doing more than she does. My 2 year old neice does more than she does right now. Im worried about Tayvah passing her up and doing what she cant and then it kicks into Brielle why she cant do those things. Im hoping it has the other effect and she learns from Tayvah and benefits from it. When we went to a family birthday party a few months ago, it was in a big hall and there were all sorts of kids around Brielles age there running around. They would go up and down the 3 steps and chase each other. Brielle was far behind and still going down the first 2 steps by the time the other kids younger than her were back and passing her up again. It was so hard to see. It pulls at my heart in the worst way. My sister and I just talked about this the other day as she works with a lady who takes care of her older grandson with CP. He falls in school and he can not play sports which he wants to because of the disability. My sister said that she can not imagine how I feel as a mom watching my daughter struggle with average kid activities. It is hard. It breaks my heart. But to me she is perfect. I just dont want her to ever think she cant do something. Right now she is so full of life and keeps on trucking with that beautiful smile on her face. Her smile is so contagious! I just hope it continues and she knows that if she sets her mind to it, she can and will accomplish anything!! Because she has already accomplished so much at 2 1/2 years old! She has impacted and given so many people hope at her young age.