We have settled nicely into our new home here in Washington and have gotten into a great routine, which we all thrive on. One of these days, the milder weather is coming and we are very eager to be able to get out and explore all our new surroundings!
We kicked off this month with our pediatrician appointment. This was where we have to start in order to establish care here in Spokane, but also, it's important to get started with a pediatrician for when the kids get sick. Lincoln had his 3 year check up, because he never had it before we moved, and then Beckett had his one year check up. Lincoln was easier, because his was a quick check, he didn't need any shots, his growth is normal, everything was fine! Beckett needed his 12 month shots, needed an evaluation, but also needed the pediatrician to send out referrals to our necessary specialists. At the appointment when they do height, weight, and head circumference, I was alarmed. Beckett hadn't gained enough weight since our last check 6 weeks prior. I personally had been battling a clogged duct since the week we arrived in Washington and it unfortunately tanked my supply, but it didn't seem to bother Beckett. He was always satisfied after a feeding, and his demeanor never changed like I wasn't providing him enough. The pediatrician's office didn't have all of the boys' records so she wasn't able to see the growth chart from here in comparison to where we were back in Texas. I did express my concerns because I was at a loss of what to do to give him more throughout the day. I knew he needed more but I didn't know how to get him that because he isn't eating what Lincoln was at that age and I didn't know how to go about doing that, so she set us up with a referral to a dietician. It's difficult at these appointments because there are milestone checklists that the doctor looks at to see if they are where they should be at. I had told her how it was always hard or me to fill these out as they are a reminder of Becketts inabilities. She apologized and said I'd never have to fill them out again, and we'd just discuss everything in our appointments going forward rather than these questionnaires, which I was very appreciative of! Lastly, the pediatrician sent referrals for therapy (PT/OT/Speech), audiology/ENT, Neurology, and Ophthamology so that we can get the ball rolling with all his different specialties that are needed.
The therapy clinic called first to set up our initial evaluation, and I went to the clinic to see them for the OT/PT evaluation. It was kind of starting over with therapy because we have to go over medical history again. It was a difficult appointment, and I did cry when they started asking me "can Beckett to this, can Beckett do that" and I was saying no to everything they were asking. It's never easy to talk about how behind he is. He of course has qualified for both PT and OT, and feeding therapy. They are coming to the house which is great, and we have had a few sessions already. It's been great to get Beckett back into therapy. Beckett's therapist even said she believes he'll be able to walk one day, so we are going to look into a gait trainer in the future to assist when he gets to that point.
We have our initial Neurology, Audiology/ENT, and Ophthalmology appointments for the coming months.
His Speech evaluation was supposed to be today, but we had quite a bit of snow come in through the night so needed to reschedule since the whole city was kind of running a few hours late today. So she will be coming later this week to see if he qualifies, but something tells me that's not going to be a problem!
We finished out the month with meeting our dietician. His dietician has worked with children with Lissencephaly in the past, and obviously the concern here is his delay in oral skills, and not able to have a normal toddler diet. I've been giving him whole milk since I weaned him from nursing, and I also explained everything he eats in a day. She said I was doing a great job with what I was offering him, but that there are some things we can add in (beans, hummus, eggs, peanut butter) to try and get him some more protein in his diet to make up for what he might be lacking from stopping breastmilk. It's common for kids with Lissencephaly to burn more calories during the day since they are having to work harder for daily tasks than a normal toddler. I obviously don't want to be over feeding him either and supplementing too much because if he gets too big, on top of having tone issues, it'll make it even harder for him to work toward more mobility. His caloric deficiency could be affecting his sleep too. Kids with neurological disorders can also have issues sleeping, there's lots of moving parts here but we are at least getting started with his weight, and hoping to see some changes in the coming weeks. This mama would love a full nights sleep sometime!
*Becketts EEG results from December came back normal, so we will continue to monitor his behavior and watch for any signs of seizures.
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