Skip to main content

Sometimes all I think about is you, late nights in the middle of June

June update:


Beckett concluded his infant massage. We went through the strokes for his stomach. I knew a few of them already because they help when he has gas! It was a quick meeting and it was actually a telehealth visit since we were still in Houston! Now we've gone through every stroke for his entire body. He will have one more session and we will do the complete massage with everything put together at once!

We had a NICU/high risk follow up at our specialty clinic. This doctor completed a developmental evaluation on his muscle tone. It was basically an evaluation that checks for cerebral palsy and I can't remember the name of it, but it was someone's name. "The _____ scale".  He scored a 58/78. It wasn't a pass/fail, but rather something to go off of for future appointments when they can see areas in which he is developed, or areas where he may not be progressing. If he had scored below 40, that would have been concerning, but with his 58, it puts cerebral palsy on their radar. That is something neurology has already told us is likely going to be a future diagnosis as well, so that wasn't something that was new information for us. (No tears shed in front of the doctor) She noticed many of the same things that all his other doctors are noticing: tight arms and legs, a weak core. She was surprised to see how good his head control is, considering everything else going on (which he has been getting so good at holding his head up lately), and he is also tracking really well with his eyes. She did notice his cross eye, and clenched fists as well, but again, none of this is new information. It was just another person to do an examination on him. She recommended PT weekly for him, and we have no issues with that. The more physical therapy, the better! We will continue to follow up with this clinic every few months to see where he is developing, even if there isn't much change, until he's around 2.

We had two sessions of physical therapy this month. We're always doing something new it seems. It's a little overwhelming because everytime the therapist comes, she gives me new techniques to work on. I feel as though there are so many things to incorporate, and it's difficult to get them all done during the day when I'm also trying to meet all the needs of Lincoln. I know I could be doing better, but I try to at least get in some time once a day working with Beckett and building his strength even if it's just for 5 minutes sometimes.

Due to his pediatrician taking some time off in May, and some scheduling conflicts, we weren't able to get his 4 month checkup until he was almost 5 months. So things typically discussed at this point are where are we at developmentally, and are we ready to start introducing food. I knew going into this appointment what the outcome would be...I just knew. But when I got the milestone checklist and I was only able to check off 4/20, it was upsetting. There's no way we would have had a different outcome. I know he's behind. But filling out this form, was just another reminder. His pediatrician did his exam and ultimately came to the conclusion that he's not ready to start purées. I know there are many philosophies now about getting babies to eat. I did purées followed by the baby-led weaning style with Lincoln. Beckett is obviously a different child, with much different needs, and unfortunately he's not there yet. When we go back next month we will see about his progress and I pray he is ready then, because the alternate truly terrifies me.

We had his weight check before our appointment with infectious disease so his doctor knows what dose he is to have of his meds. He weighed 12 lbs 12 oz! Still in the 1st percentile, but he's growing so much! He also had his monthly blood work since his counts have been good as of late. Hopefully it will be his last time for blood work for awhile since he gets off his prescription next month. 

We've reached our last appointment with infectious disease! All his blood work was great; his neutrophil count was 1300, so we won't have to do blood work for him again as far as checking his levels while on his medicine. For about 6 weeks after getting off valganciclovir, he'll have a rebound of his viral load so we've only got a little while longer of being recluses and then he will have the same immune system as your average infant! We won't have to have another follow up with this doctor (he gets off the medicine regardless of what future blood work would show) unless we need something but I can always send him a message and get his response same day for any questions I have going forward!

Lastly, he had his head ultrasound this month. He initially had one the day he was born to see what his brain was looking like (we suspected something to be wrong based on my ultrasounds when I was pregnant. My maternal fetal medicine doctor originally found the calcifications at my anatomy scan back in September) and that's when they confirmed the calcifications throughout and found the cyst (Lissencephaly diagnosed by MRI). Now he was having one to see what the current state of those calcifications were after being on his meds the last 5 months. The actual ultrasound was so quick but the waiting around was the worst! She completed the scan, and then we had to wait for a radiologist to read them and forward his findings to infectious disease. We received the results back and there are no new calcifications, and the cyst didn't change. Really couldn't ask for a better outcome!


Coming up...

Next month is another big one as he has his 6 month hearing screen (95% accuracy on his hearing for life from congenital CMV), another EEG, meeting with neurology, hopefully getting the green light for purées from his pediatrician, moving up to weekly PT, and even a trip to Houston in the mix of all that.

Everytime I look at my calendar, I'm constantly reminded of how much we have going on in Beckett's life at just 5 months old. It's been an emotional 5 months (well really 9 months) but I am forever grateful that Regan and I get to share in raising this perfect boy. I wasn't sure we would ever get to see him smile, so his smile everyday is enough to keep going for him!





Comments

Post a Comment

Popular posts from this blog

Ketchup

Lots of things have changed in the last 6 months! We left our therapy clinic and it was heartbreaking. All our therapists in Washington have been monumental in Beckett's journey and there's no way he would be where he is today without them. We left all our neighbors on Dakota Ave that turned our time there into the most memorable of our military time. We packed up our house, and headed home to Texas! The first six weeks being in Texas were a whirlwind between airbnbs, hotels, families houses, while trying to find a house to buy, and Regan starting his job. So during that time I didn't try to accomplish anything for Beckett beyond getting both boys established with a pediatrician. Most of the other doctors Beckett needed to get into had to be sent referrals by his pediatrician anyway, so that was the best place to start. Their pediatrician is very sweet, but we've had a few hiccups with her office and their knowledge of Beckett's diagnoses which has been quite shocki...
Post a Comment
Read more

Three-esta

In November, we had Beckett's Special Education evaluation. It was quite a crowd. In addition to me and Beckett, there was the Diagnostician, a Physical Therapist, Occupational Therapist, 2 Speech Language Pathologists, 2 Vision Teachers, and a Teacher for the Deaf. Prior to this meeting, we were sent questionnaires to fill out regarding Beckett's development so they had some sort of idea about what where he was at when they did get to meet him.  After their introductions, all the specialists observed Beckett's movements, and interactions, while they all took turns asking questions about his development that were specific to their individual evaluations. I answered what felt like never ending questions while they all fawned over Beckett, and they sent us on our way. As the diagnostician was walking us out, I had a little check in the see if she thought he would qualify for Special Education services. She was nodding yes, as she made sure to tell me she'd let me know onc...
Post a Comment
Read more

NAPA Knows How

Our time at the NAPA Center was truly incredible. I had seen online a handful of accounts I follow of kids doing intensive therapy, and I was definitely intrigued but I wasn't sure where to turn. A fellow Liss mom had mentioned the NAPA center so I went to Google to do my research. At the time, registration had closed to get into an intensive session for 2023, so we were waitlisted, which was totally fine since we were still in Washington and getting to a session wasn't really feasible at the time. When registration for 2024 opened up, I applied, and waited to hear. A few weeks later I got the email that he was selected to attend an intensive session in Austin the summer we arrived back in Texas, which couldn't have worked out better.  We figured out how we were going to make it happen between work, school, and getting settled into our new house. One of my college roommates that is still a dear friend lives in Austin, conveniently about 20 minutes from the Napa center, and ...
Post a Comment
Read more