Peanut Allergy Answers and Some More Tests

Good news!  Greyson DOES NOT have a peanut allergy!  His bloodwork and skin test were both negative so it is simply an intolerance.  Of course, we are still avoiding giving him peanut products because we don't him to throw up but it's not dangerous as an allergy would be. We are so glad to have answers about this and are praising God it is not an allergy! 

Also on Monday, I took Greyson to the Neurologist. I hadn't told anybody about this because I wanted to see how the appointment went first. For months (basically since Greyson was born) we have wondered if Greyson had Cerebal Palsey. When he was a baby he was so low toned that he felt as if he would slip right through your fingers. We only let a couple of people hold him besides us and when I did hold him I would usually wear him (if I was moving around anyways) because it kept him secure in the proper position and there was no risk of dropping him. His therapists agreed that he was more low toned than any other baby with Down syndrome they had worked with so we took him to the Neurologist in Jacksonville when he was a couple months old.  He agreed that CP was a possibility but the test required anesthesia and Greyson was so young and newly off of O2 so he wanted to wait.  He told us to bring him back in 6 or so months of he wasn't making strides in therapy. 

We moved to Savannah right around that mark so I just got him into a local neurologist.  I went in saying that I didn't want to leave without getting orders for a MRI to test for CP.  Several people (not doctors) have acted like I was crazy so I was half expecting this doctor to act the same way but she didn't at all! She agreed with my concerns and promptly ordered a MRI, a blood test for a muscle disease, and a DNA test to look for a depletion.  I do know what a depletion is, but I don't know exactly what she is looking for and why but I will let you guys know when I learn more.  

At this point, Greyson is receiving all the early intervention he would if he did have Cerebral Palsey so it is more for our piece of mind. We are nervous about the tests (just because who wouldn't be?!) but we are excited that the doctor took us seriously and is moving forward for answers.  

Feel free to ask me any questions you may have! 

Greyson is Sitting Up!

This week we are praising God for Grey's new found strength. After putting the kids to bed, Josh went back in to deliver drinks or something and discovered Greyson SITTING UP and he hasn't stopped since! All he wants to do is practice sitting up. He is even getting more brave and trying to pick up his hands!  We are so proud of him and we can't wait to see him grow stronger! 

Wordless Wednesday

Our Type 1 Diabetes Diagnosis Story

    A lot of diagnosis stories are similar.  The parents are not looking for signs of diabetes, so they usually go unnoticed until the child is lethargic and almost in ketosis.  Those stories are always scary and I am usually glad that it is not ours.  Boaz was diagnosed on October 6th, 2012.  We had gone to the endocrinologist about a month before and just had some routine blood work done.  Because Boaz has Down syndrome we see a lot of specialist just because.  I was shocked when the endo called and told us that Boaz was showing early signs of diabetes.  So, the same day we received those results, we headed to Savannah to get some more blood work done.  We were given a Blood Glucose meter and told to check his sugar 1 hour after bed once a week.  The first night that we did this was the night before the Buddy Walk and it was high.  I really wanted to go to the Buddy Walk, since it was our first one with Boaz and the thought of spending the day in the hospital was upsetting.  Our endo told us to check his fasting sugar in the morning and if it was over 150 that we would need to come in to see him.  We checked it the next morning and it was not over 150 so we were able to participate in all the Buddy Walk activities.  After Josh and I ate lunch (Boaz was sleeping), he woke up and we checked his sugar again.  This time it was over 250, so we headed to the hospital where he was eventually diagnosed.  So, like I said, our story is not quite the scary ketosis story.

 Well, that's what I thought anyways.  I was remembering yesterday the time that Boaz had croup.  The doctor called us to the office on a Sunday and gave Boaz a steroid shot so that we could go to Savannah the next day and see my cousins.  While we were in Savannah, Boaz threw up and was extremely lethargic.  We took him to the hospital and were eventually released with a nebulizer and sent home.  I realized yesterday that I think that's our ketosis story!  This was a few months before diagnosis and we were definitely not looking for diabetes. It is only by the grace of God that Boaz's body was producing enough insulin to bring him out of that on its own!

God is Our Strength Forever

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever."  ~Psalm 73:26

    This verse has touched me this week in remembering that God is my strength and my portion.  Even though diabetes is a very stressful disease, God gives me the strength and everything I need to get through it.  Last week I read a book about a mother's journey with Down syndrome, and she talked about how her friends each gave her a piece of themselves to help her get through.  I realized that that is exactly what God does for those who love and follow Him!  What a glorious thing!  May we never forget it!      

 

Found a Mic!

We found a mic at target! We have been looking for one because Boaz's speech therapist uses one in his therapy sessions.

Our Scary Day in the Hospital and Our New Sick Day Routine

    Back in November we went to our neighbors house and enjoyed a bonfire and fellowship. Little did we know what our night would bring.

    We put the boys to bed as usual and Boaz was a little stuffy but not enough to be alarmed. For whatever reason, which I am sure was the providence of God, I couldn't sleep very well and was pretty much up around 1am. We needed to do our nightly blood sugar check soon so I went ahead and got Josh up. When we went in there I noticed his breathing was heavy and deep so we decided it would be a good idea to pull out the nebulizer (which we have from another hospital visit with croup) and give him a breathing treatment. When we pulled him out of his crib he awoke enough to panic. I called the pediatrician, but by that point Boaz was barely breathing. So I hung up and called 911.

    While we were waiting for the ambulance and giving him a breathing treatment he stopped breathing completely for a second. Josh was holding him and I noticed he was blankly staring. Josh hit his back and he gasped for air. That was probably one of the scariest moments of my life. When the ambulance came Boaz was breathing pretty well so they calmly loaded him and Josh into the ambulance. I loaded up Emory and put him in the car. I then frantically ran inside looking for my purse (thinking I might need my id to even see him) just to remember I had stuck in the diaper bag to avoid looking for it. I flew down 17 at around 70mph and arrived at the hospital. Boaz was fine so after waiting awhile while they observed and monitored him we headed back home at about 430am. We got back inside and left the sleeping Boaz in his car seat and set up to give him another breathing treatment. The breathing treatment woke him up and he started breathing so hard that you could see his ribs. So we headed back to the er. Josh jumped out and took Boaz in and I went and parked and followed with Emory. While I was parking the lady at the front desk was trying to play peek-a-boo with Boaz while Josh tried to get him in to see a doctor. When I got in there he was headed back into triage. We filled out all the paperwork and were put back into the same room. While in there, Boaz had a few more episodes and the nurses rushed in to give him a breathing treatment When this would happen, I would have to step out of the room because I could not physically handle the stress.

    At around 730am, I was finally able to sleep for little bit (Josh had been in and out the whole time) and around 830 or 9 we got an official room. Shortly after we got to the room our pastor and his wife came by on their way to church. While they were there, we were told that Emory was not allowed to stay in the children's hospital because of the flu going around. Reluctantly, I nursed him real quick and handed him over to the pastor and his wife. They loaded him up and took him to church. My mom came by to help us out and I slept for a while. When it was nearing time for lunch mom drove me home and I grabbed some food for Boaz and whatever else it was that we needed. While I was gone they did an RSV flush which came back negative. After talking with our pediatrician and deciding that Boaz panicked when he was unable to clear out his throat because of low muscle tone, we headed home at about 430pm. Since then, every time his nose is runny or he is coughing we give him Zyrtec and cough syrup, do a breathing treatment, rub Vicks all over him, clean out his nose, run the humidifier and check his ketones.

Welcome!

Hey! I'm Boaz. I have Down syndrome and type 1 diabetes. I invite you to join me in my struggles with t1d and to help me celebrate my milestones!