Brooke’s back is healed, yay!
First, I have to ask, is it really 2013??? Did anyone else blink and discover Christmas and New Year’s came and went???
Grandma and Grandpa Morehouse spent New Year’s with us. We actually got my dad on an airplane and the flights went well - thank God, or we may never have heard the end of it. I think he got a little bored while here and was ready to get home to find something to keep him busy, but I know they both enjoyed their time with Brooke and Braxton. You can tell by the large smiles on their faces in all of the pictures.
So, where did I leave off...
Regarding Brooke’s newborn screen; we saw a geneticist and after some blood tests and some drilling questions for me by the idiot doctor (whom I really wanted to slap - maybe I’ll share later, but it will just put some people in a bad mood) we found out that Brooke is a carrier of the Duarte Variant gene for Galactosemia. What does that mean, well she’s like 1 in 20 people who have a low level of the Galt enzyme that digests/breaks down dairy (I believe that is the name and the main function), in other words, nothing. She will probably be like her mama, big brother and grandpa - not friends with dairy, but other than that, it really doesn’t mean anything but could pose an issue to her children depending on her husband’s (hoping she’ll be married before ever having kids) genetic make up. So nothing to worry about there.
At our last clinic appt Dr. Bowman was so happy with her healing progress that we get to wait a whole month before seeing her again. She’ll get another head US at that time as well and we’re keeping a close eye on her for any changes, but so far she’s rocking with no issues. We were given the ok to have Brooke spend all day on her back if necessary (not literally, but she can spend as much time on her back as she wants now). Ortho wanted the all clear before casting, so our next topic, ‘casting’.
Casts and Ortho update - Brooke did get her first set of casts. she’ll be recasted every week for the next 6-7 weeks. She responds really well to PT and she has more mobility in her knees than at our last appt with ortho and I haven’t even been doing that much PT on them, she’s an amazing little bugger (shame on mommy though, it’s hard to squeeze everything in. The casts are a bit of a nuisance when changing her diaper, but we’ll get by. They seem to bother me more than they do her. She’s a very happy, mellow baby, except when she’s mad. She lets you and the neighbors know when she is mad or does not like something, mainly being bothered when she is sleeping.
We met with the EIP coordinator again and a developmental and physical therapist for an evaluation. It was decided Brooke would have PT once a week while casted then we’ll likely move to 2x’s a week once her casts are off. There were no developmental concerns at this time. Since she is so small they did recommend another developmental and OT re-evaluate in 3 months. Our coordinator has found a PT to work with Brooke at daycare which is great. Ms. Sabina is so great and I’m glad things are starting to fall in to place. I’ve been stressed out, still am, but not quite as much, with my return to work approaching.
Brooke also had a urodynamic test recently. We have a follow up in a few weeks with the urologist, but the Dr and NP doing the test said they had no concerns, saw no signs of reflux, she has a perfectly shaped bladder that fills and empties just like it should. This is truly a miracle because nearly all SB babies have some issues with bladder and bowels, and this can change at any given time and we’ll probably have to deal with issues as she grows, but for now we couldn’t be happier.
Brooke has been doing her introduction to daycare this week since I go back to work next week (totally sucks, can’t believe my leave is nearly over). She’s spent a 1/2 day on Thurs and today she is spending the entire day at Ms. Sabina’s. Everyone loves her and Braxton was pretty excited about showing off his baby sister. One of the other little boys at daycare told me that she was his baby too, so sweet, they all love her and call her their baby. A couple of Braxton’s buddies, the girls, even gave up their bubbies for her to have on her first day.
Braxton is loving his big sister. He likes to ‘hold her in his lap’ on the sofa and he is usually a big help when asked. He went to the dentist for the fist time and before even getting started he saw a container of chapstick on the counter and he got excited. I asked the dentist for him if he could have one if he was a good boy. The kid will do anything for chapstick. I think he was a little scared but he didn’t let on and he was very proud when finished, he said, ‘I was good and didn’t even cry, right?’. Needless to say, he got his chapstick and he grinned from ear to ear. Not sure what would have happened if there hadn’t been chapstick as the prize at the end.
I will continue to update the blog as we go and upload some pictures too. I want to thank everyone for all of the prayers and positive thoughts. Brooke is doing so good, it truly is a miracle. When we were given the diagnosis, we were also given a book of all the possible things that she may have wrong with her, or that we may have to deal with and so far, we are issue/symptom free. I pray it stays that way, but if not, we’ll take it as it comes and do the best we can. I do believe all of the prayers and ‘ancient chinese secret tea’ have really helped and keep her going. I still worry about her and it is hard to leave her at daycare, but she has to grow up and I have to remember, she will be just fine.
I apologize for typos and the block style writing, but I’m exhausted and really wanted to get an update posted - so, sorry!
Thanks again, until next time...
Angela
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