Additional Needs

A Month of Special Needs Parenting

Posted by Brittney Baumgartner on 10th December 2015 Additional Needs, Disabilities

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Unfortunately November did not show any rainbow at the end with my pot of gold.

During the month of October, we were busy raising awareness for Spina bifida, attending the annual Walk-N-Roll.

Besides that, Oliver was facing his own little battles with a reoccurring right clubbed foot, central and obstructive sleep apnea, pressure sores, UTI infections and teething!

This poor little guy needs a bigger break than I do!

We are back to weekly casting to try and stretch his right foot out.

We successfully corrected both clubbed feet when he was around 6 months of age, through this casting.

It has been a year since his Achilles tenotomy release surgery, and his right foot has started to tighten up again.

Our goal is to always avoid surgery when possible, so we opted for serial casting again.

Although he does not fully crawl yet, this 18 month old just wants to be on the move...all the time.

Throw a full leg cast into the equation and you have one frustrated and stinky baby!

During our second week of casting, we developed a pressure sore and had to take a break to let it heal.

Because he is paralyzed from the knees down, blood flow to the areas is poor because movement is not existent.

This means when he has cuts or sores, they are much, much slower to heal than most others.

Unfortunately this can lead to serious infections if not cared from properly and caught early enough.

We just so happened to catch his in good timing, and it cleared within two weeks.

So here we are with his 4th cast, ready to be done and take a bath!

The next little bump on our list, was this recent diagnosis of central and obstructive sleep apnea.

This all started with snoring which led to a sleep study, resulting in our new diagnosis.

After the results, we were sent to an ENT (ear, nose and throat specialist) to evaluate his tonsils and adenoids.

The doctor informed us that they were larger than other kiddos his age, but not too alarming.

Our only option was surgery to remove them.

Nooo!

Remember, our goal is to avoid surgery at any time.

So I called the neurosurgeon and he now scheduled a full head and spine MRI to see what his Chiari is looking like.

Chiari is also known as hind brain herniation.

For Oliver, because of his spinal diagnosis, it pulls on his cerebellum thus protruding into his cervical spine.

This can cause problems with eating, swallowing, breathing and more.

This is why when Oliver started snoring, I knew something was different with his breathing and the amount of space in his esophageal region.

Beginning of November we have the MRI, and surgery may be our only two options whether it be to remove the tonsils and adenoids, or a more serious surgery to decompress the area his Chiari may be affecting.

Our other constant battle is urinary tract infections.

Oliver suffered two before we got told that we would cath him around the clock, every three hours.

Just recently, while cathing, we got our third one.

They are such a hassle to go through, because he gets fevers and different symptoms that could mean a number of things other than an infection.

I always look like the over paranoid mother sending him in to the ER for a fever that won't go down with medication.

I have left with respiratory diagnosis, simple cold diagnosis, and this last one was the real deal.

Because of this last one, we are now prescribed a daily antibiotic to take until who knows when!

The last little update comes with ease compared to the others.

Teething... this superman of mine popped in, not one but TWO molars without me even knowing.

I was simply scanning his gums one day and noticed the two pearly whites!

With all these downs, comes our ups though...Oliver has learned to say, "Look!" and, "Dog, Wow-wow.”

He has the more interesting conversations with himself that I can only wish I knew what he was really saying.

He has even recently learned how to use his Bumbo wheelchair!

Life is a constant rush of appointments and treatments for us, but we always make sure to stop and appreciate the little things we have going.