1)I am excited! Once the 4 day preschool teachers saw the 5 day room they now see why that room is not right for Annabel, that she would be too high in so many areas that it wouldn’t be beneficial to her. So, it is looking like she will also be in the 4 day, ½ day program with Johnathan and Madelyn! She will start the more intensive program this summer to work on transitioning and just getting used to a school day. I am so happy that they will be together after all! I had been so worried about if the 5 day program would be enough for her.
2)Annabel had her EEG and neurology appointment on 4/1. It is known that Annabel’s EEG will always be abnormal due to her brain bleed, however, her EEG did show more activity than the doctor expected to see. Prior to having the report read the doctor was leaning towards her having childhood migraines (BPV – benign positional vertigo) with symptoms including vomiting and random eye shifting. I had terrible migraines as a child and still face them today so I had mentioned it to her. After reading the EEG it is still unclear as to if she had/has seizures or if it’s migraines or there’s still a chance it could be something with her shunt. So, we decided to take the wait and see approach. If she is having seizures the doctor believes they’d become more frequent and we will know. The doctor did give me a script for her to take when we’re traveling long distances in case it is BPV. So, no clear answers but not a diagnosis of seizures either so I’ll take it!
This is Annabel prior to the EEG, happy as can be. She was then strapped down like this to put the leads on, needless to say this did not make her happy and I never did get a picture of her all hooked up, she was SO mad!
3)Johnathan had his first OT appointment on 4/1. I am really happy with Lindsay, I think she nailed it with her overview of his issues. He has a lack of muscle in his cheeks, an endurance issue with chewing, and needs to work on maneuvering his tongue. He is also in another spurt of choosing to not eat hardly any solids, preferring to only drink his vitamin D/carnation mix which of course does get him full enough to sustain him if he chooses. So we have that issue to deal with as well. He sees Pulmonary and has his lung function test this Thursday so I imagine his weight won’t be spectacular and I’ll get in trouble. I have decided I’m not going to worry about Pulmonary has to say anymore, Johnathan is not going to be on a liquid diet the rest of his life so if I have to I will take the milk away (just give him some water or much less milk) so that he realizes he’s hungry and starts eating before drinking his meal. He is not going to be a on a liquid diet for life!
On Friday Johnathan had his 3rd haircut. Daddy said it was time he looked more like a boy. To be fair, I was the one with him and told the lady to cut it shorter but I think it's a little too short, his curls are gone. :( I think they will grow back so next time I just won't get it quite so short. He looks very cute but I miss the curls, they are so unique and I think he should be able to have them for awhile yet.
4)Saturday Annabel had an awesome PT session on land. Tracie tried her in a reverse Kaye walker and she actually held on, stood up very nicely, and even tried to take a couple steps. We are going to work towards getting her in to one of these, hopefully she’ll have it mastered within a year or so! In the meantime we still need to figure out which walker to order for her, something that allows her mobility when we aren’t always working with her yet helps her gait too. She can move around well in the Miniwalk but it doesn’t do much for her gait, she chooses to propel with her right foot, mostly dragging her left foot along. 
Annabel is really working on her gross motor skills right now. Saturday night she ended up pulling up to stand along the couch and was facing outwards, stepping along the couch and repeatedly taking something and throwing it down, only to bend down and/or kneel down to get it and stand herself back up. B.J. and I were amazed watching her! And this was all without her orthotics! 
She did get new orthotics this past week and they have been helping her, I think she’s getting much more strength in her legs for weight-bearing. That is our goal right now, to work on her weight-shifting back and forth between legs.5)The kids were all decked out in their State gear on Saturday, what a bummer that they lost. We had our good friends over for dinner and to watch the game. It was so much fun seeing the kids interact! Madelyn was so curious of baby Leah and all of her things and one point Johnathan got on the ground and was softly rubbing Jonathan’s back. I think they truly “get” each other and always will! There were 5 amazing kids in that room!
6)Sunday morning we went to my parents church for Easter Sunday. There they had an egg hunt before the church service. Mady and Johnathan had a ton of fun and collected quite a few eggs! Annabel collected a few too and got one really cool blow-up one! After church we went to dinner with my parents and my sister’s family at Stillwater. It was a long day, a little too long for the kids to be sitting so long, I think we’ll have to do things a little differently next year. Sunday afternoon the kids opened their Easter baskets (it was too early in the morning to do it) and then played outside with some of the things they got for Easter. It is amazing to watch Mady and Johnathan running around this year, they are so much stronger than last year and can do so much more! Both of them are now climbing the ladder on the swingset and going down the slide all on their own, they are growing up too fast!
7)This week is full of our usual therapies and another very busy Thursday (although not quite as bad as last week). We’re praying that Johnathan’s lung function test shows that as he’s grown so have his lungs, possibly even allowing him to reduce his Flovent from 110 to 44 for the summer. Hopefully my reservations are wrong and his growth will be okay so that they won’t be on my case as they have in the past. This appointment seriously stresses me out. If we can just get his solids eating under control I’d feel so much better! I know some of it is typical toddler eating habits but his is extreme. The one thing that is frustrating with him is that there’s not one thing (such as mac n cheese, nuggets, etc.) that I can feed him that I know he’ll eat, it varies all the time!
2 comments:
It was great seeing you guys! Our kids do get along and I will love watching them grow together!
Annabel is doing great, she was scooting all over the place. Johnathan looks like such a big boy with his new haircut I love it! Mady is so inquisitive you can see her processing everything around her!
I believe in the you have to pick and choose your battles with our kids and YOU are right you don't want Johnathan on an all liquid diet but you don't want him to lose weight either, however Dr. M is not concerned because all 3 are growing great. If he keeps getting pushed the milk then thats what he is going to want. I understand pulmonary too they want his lungs to grow but they also need to look at the bigger picture, not what Johnathan does every 3 to 4 months but how his growth is over the year and he is growing, at 2 yrs old he was 20 lbs now he is almost 25lbs thats great and he is not even 3 yet!!
Love you guys, I will be praying that the appointment goes good but please remember your a wonderful mom and the kids reflect that by how GREAT they are doing!
I feel your stress around the upcoming appt. I always feel so stressed the weeks prior to my sons appt with the feeding team. They always want him to gain, gain, gain.
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