Amiyah and Kaia’s Health Journey

So Amiyah has walked in Kaia’s wild footsteps and also needs thickener. We are being sent to GI for our reflux and have to repeat the swallow study in 3-4 months. After the next if there is no improvement they will do a triple scope and see if she needs the same surgery that Kaia had this past year.

Last week Kaia had a follow up with the aerodigestive clinic at Le Bonhuer. We were put back on thickened, started some new meds, and had some immune labs done to see why she stays so sick. We have gotten some of the labs results back that show Kaia having an immunodeficiency. We are waiting for her doctor to call and for other results to be posted.

We are also in Memphis tonight and tomorrow for Amiyahs appointments. Expect to see plenty of updates in the days to come!

Kaia did great for her swallow study! She still needs thickener in order to swallow safely, but we are praying that we can figure out why at our next appointment in a few weeks!

After stopping to see snakes, lizards, and many other critters at the animal expo, we have made it to our home away from home. Now to eat, relax, and have Kaia’s 9th swallow study tomorrow!

Our first appointment did not go as planned, but at our second appointment Kaia was diagnosed with level 2 Autism.

If you have been around us much in the past 2 years, you understand why this diagnosis is honestly a relief after having doctors tell me that I was crazy and she was fine. I will ALWAYS be a voice for my babies.

We are Jackson bound! Tomorrow we will be having another MRI on our brain and seeing our neurosurgeon, a developmental psychologist, and a developmental pediatrician. Praying that after such a tough day we leave with tons of answers instead of tons of questions!

Baby sis had her first Le Bonhuer appointment today.

They did a scope in office. Her laryngomalacia is resolved, but her reflux looks much worse. We are upping her meds and ordering a swallow study.

Sweet pickle had her scope with ENT today. Her laryngomalacia is mild (as was Kaia’s) but she has extremely severe reflux which is why her swallowing and breathing is much worse than Kaia’s. We are being referred to a few doctors at Le Bonhuer.

So everything looks about the same. She is still behind on speech and swallowing, we may know a reason for that after our next brain MRI in May or we might not and it could be that either Kaia is behind and as she gets older she will catch up, or she may not and that’s okay. As far as her headaches multiple times a week, we are just going to monitor them and only start treatment if they get more severe or she no longer responds to pain medication.

Memphis bound to start off 2024!

Thank you to everyone who prayed and supported us through 2023❤️

A little better update on our girl to explain some things:

As of right now, thickening her liquids is keeping lung infections at bay, but her pulmonologist is worried about lung damage from aspiration. He is wanting us to start airway clearing treatments at home twice a day and up to 4 times a day when sick. We would have to give her albuterol, saline through a nebulizer, and manually do cupping on her back and chest with our hands to loosen up anything that may be sitting in her lungs. This would ensure that if any food, drink, or saliva is aspirated that it would be coughed up.

Kaia is also on a medication to help with excessive saliva that has been working okay but it does have quite a few side effects and if I miss a single dose, she chokes and aspirates all throughout the night. It was suggested that we do Botox injections in her salivary glands to stop the over production. The only downfall is that she would have to be put under anesthesia every 4-6 months to have the injections as it is only a temporary fix.

Bottom line is that all of this plus other issues stem from her brain condition and are not necessarily issues with her anatomy. Until her neurosurgeon decides to do surgery to treat her Chairi malformation, it’s very unlikely that her swallowing issues, along with other symptoms, will improve on their own. We are planning to go ahead with the airway treatment once baby sister gets here and we get used to having 3 kids. As far as the Botox it is a big step and would be a lot on Kaia’s body so it’s still being thought about.

The best part about staying at the FedEx house so frequently?

The fact that we have been to the zoo 8 or more times this year with the free tickets💜

We overall got a good report from all 3 doctors we’ve seen today. With the current treatment plans Kaia is stable for the moment. There are some more invasive treatments that were suggested but we are going to wait until after baby comes to add anything else to our plate

After a much needed break we are headed to Memphis for the night with a very important appointment tomorrow.

So we still have no answers and this appointment was pretty much pointless. Said we can’t really do anything until Kaia can talk well enough to tell us what’s going on and for us to get another MRI in May.

Headed to Jackson to see a new neurosurgeon! Praying that this appointment leads to answers and treatment❤️

Undoubtedly Kaia is not used to getting up and out of the house this early😂

Happy World Airway Disorder Day my little warrior🩵💪🏻

We are finally headed home after a very long day! We didn’t get many answers at Genetics aside from the fast that both Danny and Kaia have Lynch Syndrome which drastically increases their chances of having certain cancers. For Kaia it doesn’t mean much until she is closer to 18, but for Danny it is definitely something for us to watch out for. As far as the ophthalmologist Kaia does not need glasses (but likely will in the future) and everything looks healthy!

It’s now time for us to grab some food, head home, and rest!

Kaia doing her post EEG soak😂💁🏻‍♀️

Kaia is fussy and definitely needs a bath, but we are being discharged. There was no activity on her EEG, but we also still have no answers as to why we are having daily headaches. We have to come back Monday to have her eyes checked and then Jackson at the end of the month to see a new neurosurgeon.

Also, Kaia’s genetic testing results have come back, but they were not able to discuss anything over the phone.

It took 3 of us to hold her down, but this is our new hair for the week! This mama is definitely going to be sore.

She’s good now that it’s over, but she HATES being touched.

Their favorite part of the FedEx Family House? Toys!

Please keep us in your prayers this weekend. We head to Memphis tomorrow for Kaia to be admitted for epilepsy monitoring. We thought we would be coming home Friday but we found out today we will be there until Monday, which is something that we were not mentally or financially prepared for. I know God will make a way regardless.

We were finally not brushed off by her ENT! Despite Kaia’s swallow study coming back normal, she wants us to continue to thicken her liquids but instead of honey, do it between thin and nectar to where it’s safer for her to drink but the texture isn’t as bad. As far as solids go, she wants us to start a minced and moist diet (everything cut extremely small and mixed with a gravy or sauce) because even with her weight being fine, her iron is extremely low and she is lacking nutritionally. We are also starting a new medication to thicken her saliva to help with her choking in her sleep. If she is still choking and keeping upper respiratory infections after the next few months, we will do more in-depth testing.

Kaia passed her swallow study, but I do not agree with them that her swallowing is now normal and healthy.

Don’t get me wrong, I would love for it to be true, but what we see at home is the total opposite.

We are settled in to the fedex house for the night. (At this point, we are on a first name basis with the staff😂😂)

Tomorrow Kaia will have her 7th swallow study and a follow up with ENT. These will tell us if her surgery worked. I haven’t seen any difference at all here at home, and I’m praying they see the same on the swallow study so we do not get brushed off (like we normally do).

We are finally headed home. It took an extra hour for the MRI because my child isn’t even still while sleeping. They gave her the maximum dose of anesthesia and then had to give her gas in order for her to stay still enough to get successful photos😂

As far as the results I will update whenever we receive them later this week.

There are a lot of times that I may complain about Le Bonhuer, but this place is honestly incredible. I didn’t get the best photo, but there is a company currently building this little patio on the walkway outside of the hospital, and underneath every stone is a prayer from the patients and families that attend Le Bonhuer ❤️

You truly never know what event they will have at Le Bonhuer, but it’s definitely fun when celebrities are involved!