Four Years of Medical Updates

 

 Before we moved back to Detroit, there was a concern for AaronMatthew's lymphocytes. Lymphocytes are a white blood cell. His were on the low end. People with Down Syndrome are more prone to blood disorders and we were referred to the Hematology Clinic at Children's in St. Paul. I promised I would get him into Children's here in Detroit as soon as we moved. The Hematologist assured me that although AaronMatthew's lymphocytes run outside of the "normal" range and on the lower end, it's nothing to be concerned about unless they drop below "800" or "0.8" 

  We found a specialty eye clinic in Dearborn and let me say, that was a waste of time! AaronMatthew has an eye-turn, and they wouldn't acknowledge it. I saw two different pediatric opticians to address this issue. I showed them photos and videos and he even did it. His right eye tends to turn in more than his left eye. I was given a letter from the eye clinic with good wishes for happy health because I didn't agree with them. I ended up going back to Henry Ford Pediatric Specialty Ophthalmology. The doctor did indeed agree that AaronMatthew does have an eye-turn due to hypotonia (weak muscle tone- which is common with people who have Down's). Since he is able to correct his eye-turn, he is okay without any extra assistance.

AaronMatthew had allergy testing. The results were that he is allergic to common molds and ragweed. Everything else came up okay.

AaronMatthew took Speech and Occupational Therapy for about 2 years. He did well. We ended up stopping services because the combination of Therapy 4 times a week and school were taking a toll on him. He would have a hard time with self-control and self-regulation at Therapy.

AaronMatthew is extremely allergic to mosquitoes. As you can see, this poses a problem. We have to keep him indoors when mosquitos are most active.

And again, AaronMatthew suffered from another episode of extreme hives, like he did back in August of 2018. He was hospitalized for 2 days. It started out the same way with wheels on his forehead and redness on his chest and stomach. I brought him to urgent care and they gave him a shot of steroids to try and stop it. It seemed to work until about 4:30am. I took him to the ER in the early morning hours and we were admitted. The hives and rash quickly spread and turned purple like before. They treated him with Prednisone and Benadryl. He was extremely irritable and itchy. I asked for Calamine lotion. His dad and I bathed him and bathed him in the calamine and that seemed to help. The diagnosis that they came up with was, "Idiopathic Acute Hives." Idiopathic=unknown origin, Acute=spontaneous. It happened again about a year later, I slathered him in the calamine lotion and gave him Prednisone with Benadryl and I believe the combination with prayer stopped it.  

He had his echocardiogram. Everything came out as well as it could. There is no leaking from the mitral valve and his heart is functioning very well. We don't need to do check-up's for at least 2 years.

We had a sleep study. AaronMatthew is not a very good sleeper. He will sit up and rock in his sleep several times a night. He sleeps all over the bed. We found out through his sleep study that he, like his older brother, has sleep apnea. We did a Sleep Titration Study with a CPAP, but he was unable to tolerate the mask. This could attribute to some behavioral issues. When a person is sleep- deprived, they tend to have some issues. 

With that, that brings us current. Currently we are dealing with this: Within the last few weeks, AaronMatthew woke up with his hand and arm reddish-purple. It was quite large and alarming. It looked like he had slept on it, because it had marks where the creases of the blanket were. It was only on the surface below his skin. I learned about some blood disorders when I went to Phlebotomy school. I know that the smaller blood vessels burst under the skin and bleed into the tissue; it's called purpura. I took him to his pediatrician a couple hours after he woke up with it. She took photos and consulted with other doctors about it. She ran his bloodwork and his ALT which has to do with his liver was high. His white blood cell count was low. Unfortunately, they didn't check his platelets with the CBC. We were referred to the University of Michigan in Ann Arbor for Dermatology. The Dermatologist said this is, "not normal" and "not my expertise." She referred us to their Hematology Department. Looking over his CBC's since 2019, he still runs low for lymphocytes. One time in 2020 it dropped to 0.6. Remember the Hematologist here at Children's in Detroit told us to be concerned if it dropped below 0.8? His platelets are low too. The Dermatologist said he needs a full platelet evaluation. I think we're all concerned about some blood disorder. 

Four Years and Four Months Later

AaronMatthew is now 8 years old. So much has happened, I didn't blog for 4 years. I will begin with this...

Last year around this time, we helped a larger Metro Detroit church in the Downriver area start a Special Needs Ministry with a sensory room. They did a mini-documentary of AaronMatthew to launch it off. It was touching and heart-felt. My husband Bernie and I served these young hearts with all sorts of different abilities. We gave them a safe place to learn about God and worship Him. There were parents who didn't go to church because there wasn't a place where their child would be ministered to. We gave them that place. Eventually, we stepped down because back-to-back services became too much for our boys and AaronMatthew would become over stimulated and not be able to self-regulate.  It was an honor and privilege to be apart of leading these young ones to the feet of Jesus. 

The school district here has an amazing Special Needs Preschool program put on by an amazingly gifted and talented teacher who has become near and dear to our family. She helped to teach AaronMatthew the alphabet and to phonetically say letters. AaronMatthew was to move onto Kindergarden and I felt like the school district here was not equipped to handle him. I put it in writting for a revision of his IEP and heard of a center program in the Downriver Area at Madison Schools in Wyandotte. The invitation to the center program was by referral only. AaronMatthew was accepted into their program and there are other students in the program who are a lot like him with his abilities. AaronMatthew is working on writting his long name. We asked him if he wanted to go by "Aaron" or AaronMatthew. He said, "AaronMatthew."

I have a sister who is a year and 3 months older than I am. She had a stroke as an infant and it caused her some brain damage. She was in Special Education and put into mainstream classes. All her life, all she's wanted is for people to treat her as "normal." My mom and her fought for inclusion. At first, I thought that too for AaronMatthew. We still treat him like any other kid, but then I had a change of heart concerning inclusion. He is in second grade, but still hovering around a preschool/kindergarten level. He has a difficult time  communicating. He says 3 to 4 words at a time and not a complete sentence. At times it's difficult to understand what he says or wants unless you know him and are around him a lot. He understands what people say. If he doesn't understand you, he will say, "What?"  He says and understands about 1250-1500 words. Behaviorally, when he gets out of routine, he can be quite the handful. Sometimes we can catch him in the early stages and explain things in a way he can understand and give him choices and clear direction. Then he might self-regulate. When he gets overstimulated, (when his environment is different and there's a lot going on) he looses his ability to self-regulate after a time. He will calm down when he is in a familiar quiet place with his beloved blankie. He will then talk aloud for a half and hour or more with himself and with his stuffed puppy. Most of the times we cannot make out what he says, but when we do, it's like he is talking about what he just did. Or sometimes he needs to spin endlessly (stimming) in circles with his stuffed puppy, singing and spinning to Christian music.

He loves his dog Jasmine and Jasmine loves him very much. She follows him around constantly and never leaves his sight. She knows that AaronMatthew needs constant supervision. They play together often and are the best friends. AaronMatthew can tell Jasmine to roll over and she will do it. I cannot explain to you the bond and the attachment Jasmine has with AaronMatthew, all I can say is that Jasmine loves AaronMatthew very much and will do almost anything within her power for him.

AaronMatthew has always loved looking at picture books. His favorite is the Captain Underpants series. He loves SpongeBob and he has his favorite Disney movies. He enjoys watching Sid the Science Kid and Super Why. He will go to his favorite parts in a movie, pause it and replay it over and over again! He likes to line up his hotwheel cars. He loves swimming and loves to go to the indoor playground. Vanilla ice cream with "berries" on top is his favorite! He loves pizza with only cheese on it. He recently has taken to playing basketball outside. He spends a long time trying to get the ball in the hoop. He's getting pretty good at it and does it over and over again. We just got him into the Special Olympics for this season. We went bowling. We will continue that this winter and then go into track and field for the Spring.