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.

The Month of Extreme Rashes

Everything with AaronMatthew is always extreme. There has been no middle ground.

On Independence Day, about mid-day, we noticed AaronMatthew rubbing his stomach. Of course we weren't at home. We were out-and-about. His stomach looked red and inflamed. We picked up some benadryl and headed for home. I put him down for a nap after giving the benadryl to him. He seemed crankier than normal. I thought it could be a heat rash since it had been extremely muggy the past couple of days with high temps. After nap, he looked okay. Still red on the belly, so we went out for fireworks. It was obviously dark out so I couldn't see this rash as it developed into something fierce. When we got home and about ready to retire for the night, I could see this angry red rash starting to engulf his entire body. It had spread from his belly to his chest and was creeping down his thighs. We suspected it was hives, but didn't know for sure. So I took him into the ER. And sure enough. Yep. It was hives. They said if it gets worse or spreads to his face to come back in.

And...

the next day...

the hives not only spread to his face, but it also spread from head to toe and turned the hives from the previous day purple!

these were GIANT welts on my baby's back!

I called my son's pediatrician after the hives reached his face. They didn't return my call until later in the evening after I had been in the ER again. 

The ER doc said this was a pretty "impressive" case of hives. 

They gave him a steroid and something stronger than benadryl and we were on our way home. He assured us this was the worse it will probably be, and things generally get worse before they get better and not to be alarmed. 

(Seriously! Hives all over my child's face. And not to be alarmed?)

I took AaronMatthew to his pediatrician to try to pinpoint what the root cause was for the hives. (We were thinking some cheese puffs may have set him off.) They took some of his blood for allergens and a CBC. And came back with a blood test result that he reacted to cow's milk and has a slight allergy to it. Also, his white blood cell count was really low and his absolute lymphocytes were in the high 800's. They said it could be due to a strong viral infection. We got an epi-pen in case we need to use it. He has been dairy-free since then. I had requested they also check his thyroid levels. Glad I did, because they came back abnormal. They referred us to an Endocrinologist. But I cancelled as I know his body was under attack from the hives probably causing his thyroid levels to increase. I knew they wanted to retest his blood when he felt better, so I waited.

About mid-way through July, he got the Hand Foot and Mouth Disease. It had been going around with some of the little ones that we know. Of course AaronMatthew got it worse of all. He was covered from head to toe. 

After AaronMatthew recovered from Hand Foot and Mouth Disease, I made an appointment with the pediatrician to get another blood draw. I had to really push for another thyroid test. They didn't want to do it since he had it taken just a month previous and they felt it was sufficient. Glad I did because his thyroid levels were now perfectly normal. Which is acceptable for AaronMatthew. They bounce around from time-to-time and I don't want to jump the gun with getting him on thyroid medication for the rest of his life if it's not necessary. It was explained to me from a previous specialist that this is common for Down Syndrome.

We got the results last Thursday for his blood work...

His white blood cell count is even lower! And so is his absolute lymphocytes.

This explains why everything he gets is so extreme. He doesn't have a healthy immune system to fight disease.

They want to refer us to a Hematologist/Oncologist. But of course, we are moving this month back to Detroit, Michigan.

We will pick up back where we left off with Children's Hospital in Detroit.

For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil,

 to give you a future and a hope. Jeremiah 29:11

Adventures in Potty Training

But it shall not be so among you: but whosoever will be great among you, let him be your minister;

And whosoever will be chief among you, let him be your servant:

Even as the Son of man came not to be ministered unto, but to minister, and to give his life 

a ransom for many.

Matthew 20:26-28

I started out this morning reading the Bible like I so often do. My boys were still sleep and my husband was resting before work. These verses in the book of Matthew really stuck out to me. So much so, that I found myself praying to be encouraged to persevere (with a good attitude) and press into Jesus.

My plans were to get my son off to preschool and clean and organize my home and catch up on some well needed loads of laundry.

And then... my oldest son woke with what appeared to be pink eye starting or an irritated eye. I knew today was going to be a sick day for him.

I decided to seize the day and potty train my youngest, AaronMatthew. I had set aside time towards the end of this month to potty train, not intending to potty train this early, but eh. house chores can wait.

Thus, the verse above in Matthew becomes applicable and so does my prayer. I got to become servant of all to my son and gave up almost every waking moment of time today. I get to do it tomorrow and the next day and whatever days and times lay ahead to dedicate it to solely potty training. God knew I was going to need those verses to get me through this day. Its a lot of work and self-sacrifice. I wanted to give up several times but I drew strength from the Lord and my network of people I quickly put together to pray for us and cheer us on.   

I pushed liquids with AaronMatthew all day. The more I would get him to drink, the more he would pee. 

Many times when I put him on the potty, especially after a piddle, he would get frustrated at me. He cried, yelled, hit and tried to throw a toy car at me. He wouldn't pee for a few minutes while sitting on the potty and would continue to cry. I knew he was holding his pee and he preferred to just find a random place to squat. This is where my prayer this morning for perseverance (with a good attitude) would come in... These fits of frustration happened several times for him today. They would immediately go away once he peed on the potty. I kept a calm and good patient attitude and encouraged him in love and cheered him on.

 

AaronMatthew did so awesome! He peed 10 times on the potty and my husband got him to poop on the potty. He had 4 big pee accidents. Two of which were my fault because I wasn't paying attention and he piddled 4 times. One time he went into the bathroom, sat on his potty and peed all by himself without me giving him encouragement to do so!! And he is diaper-free tonight. The plan is not to go back to diapers. 

Pincer Grasp

AaronMatthew's Special Education teacher gave us some puzzles to work on this next week as he works on developing his pincer grasp.

What might come easy to most 3 year olds is challenging to AaronMatthew. It is challenging for him to grasp a tiny object with his thumb and index finger, (known as the pincer grasp). AaronMatthew tends to use 3 or 4 fingers to pick up an object instead of 2.

The pincer grasp is a developmental milestone which occurs neuro-typically between 9 and 11 months of age. Babies generally will use all of their fingers to pick up a toy, spoon or Cheerios.  Then they will refine the skill with their thumb and their index finger. Children with Down Syndrome will generally develop this fine motor skill a little later.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          AaronMatthew needs encouragement to use the pincer grasp and reminders of how to do it at first. But once we work on it for a few minutes, he gets the hang of it and is able to do it for himself and does not need the reminders. AaronMatthew learns best through repetitiveness and copying, especially with action and song.

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                         AaronMatthew wanted to see if he could pick up the puzzle with both of his index fingers.

3 Year Pediatric Cardiology Check-up

A total answer to prayer! How Great is Our God!!

AaronMatthew had his 3 year pediatric cardiology check up. It started with a echo cardiogram of his heart. We were pleased to get great results back from that test which showed any leakage he had is totally gone and he has completely healed. The mitral valve is also completely healed and isn't leaking either! The Pediatric Cardiologist said he did not need to take antibiotics before dental procedures and there is no need to worry for infections. He is in the clear. She said we could make our next appointment to see her in 2 years, when AaronMatthew is 5 years old.

 Psalm 147:3 

He heals the broken-hearted and binds up their wounds.

AaronMatthew and His Big Brother

AaronMatthew absolutely adores his big brother Tres and wants to be like him in every way!

Tres has literally taught him almost everything he knows. Because of his big brother, he can drink and eat on his own, walk, stack blocks, play with hot wheels, copy over 50 words and signs...

to name a few... 

Tres adores AaronMatthew too!

We really didn't need to teach Tres to look out for his little brother. He just does. He tries to protect him from harm. Like this day, he saw AaronMatthew walking around church (without knowing I was watching) and grabbed his hand. He wanted to help him up the stairs.

These two are literally best buddies!