We made it to Delaware… with minimal traffic- which always makes me happy! Being in the company of doctors who are so confident and can answer questions that I forgot I had, or that I never even thought of always calms my mind.
When we got into the room with Dr. Bober, we sat down and Addie started playing. We talked a lot about where she was developmentally, her walking, her sleep- the usual. We then talked about her ears- which are at the top of my worry list. With her tubes coming out and her infection, we came to the conclusion that she will, most likely, end of with another set. Also, interestingly enough, we discussed the idea that her adenoids could also come out. Our ENT, locally in Rhode Island, spoke about a 50% chance that if we remove the adenoids with another set of tubes that a recurrence of tubes would be unnecessary. Dr. Bober assured me that this number is not reflective of children with achondroplasia.
A new lesson in life.
So… we will check her ears in a few weeks, see if there is fluid in there, and then take it from there. Should fluid still be in there, we will check for swollen adenoids. Fluid, tubes. Fluid and swollen adenoids, tubes and adenoids. Plan of action- simple! Of course there are a million steps in between, but to have a start and an end point makes the middle ground a bit easier to navigate.
So we are moving out of the worry of hydrocephalus, as her soft spot is closed and she has no signs, as well as the concern for central apnea (which seemed to disappear after 6 months) and kyphosis because Miss A is up and walking… and her x-rays looked amazing! Hearing that her spine looks great is nothing short of wonderful news!
And what are we looking at now? The bowing in her legs, which is something Dr. Mackenzie really keeps an eye on. Obstructive apnea and being aware of the signs, such as snoring and bad sleep patterns. And we also have to be more conscious of ear infections, especially because Addie’s tubes fell out already… but we already talked about that!
Some interesting facts for expecting mamas:
We have a 2-3% chance of having another child with achondroplasia.
A Level 2 ultrasound after 30 weeks will give us answers if there are size concerns.
We could still have a child with dwarfism without knowing (just like with Addie!).
We aren’t concerned. Knowing what we know now, we are thrilled to be welcoming another baby into our family!
… and then Dr. Mackenzie. After we ended up doing acrobatic acts on the floor:
Colleen and Mac came in to examine my sweet yoga girl. After a few looks at her, we took to the halls of DuPont for some walking action. Make that running! Knowing that she’s been falling sideways a lot, I was worried about her legs and knees… but thankfully her legs are just the way they are (for now). We are having x-rays done to make sure her legs are going in the right direction and, as usual, monitor if she has any pain or increased falling. Addie does have the typical hyper-extension in her knees, but she also has hyper-mobility that causes her knees to arc sideways, which could be adding to her falls (but not bad per se).
As expected, we will be going back in 6 months (really 7) for her next set of appointments and are excited for what lies ahead. The best part of going to DuPont are the answers, the new knowledge and knowing that the next time we see these specialists we will have a whole new world opened to us. Given that we see the doctors every 6 months we are never given too much information that we worry for months to come, but we always leave with things to think about.
… we hope we can work with our insurance going forward and are looking to generate more information about United’s vendetta against major medical providers and bringing them back to Nemours! (Hello high hopes!)
Until then, We hope you had a wonderful Sibling Day… Addie loved giving her soon-to-be baby sibling a kiss while we were on a beautiful family walk: