Luke 6:45
What flows from the mouth is a reflection of the heart.
On Oct. 4th Jack had surgery to insert tubes into his ears and also have a bronchoscopy done. The procedure to enter the tubes doesn't take long but the bronchoscopy took a little longer as they inserted a camera into his esophagus. It appears that his passage way is narrow and he would benefit from occasional nebulizer treatments throughout the winter. Dr. K assumes that he will probably aspirate for a few years. This was disappointing news as I was still hopeful to nurse Jack and say goodbye to my pump (or at least give it a rest), but that doesn't look promising. So we will continue to thicken his bottles and see what the swallow study tells us in December. I can be stubborn (or very optimistic ;)) and won't give up until I see it to believe it.
Later in October we went back to the Down syndrome clinic at Children's. They gave us a very helpful chart of appointments to make and a timeline of when things should be done. One of those tests was for the thyroid gland. Kids with Ds have a tendency to develop hypothyroidism (lack of thyroid hormone) and the easiest way to detect if there is a problem is by a blood test. Well, this mama wasn't so excited about the blood test. I don't know if the lab tech was new on the job, but after he attempted to take blood out of Jack's left arm and couldn't get enough and then moved to the right one, I told Chris that his turn was up to hold him. I couldn't watch another minute of the guy poking around a 7 month old's soft, pudgy skin looking for a vein in one arm and then attempting to get more out of the other one. Yikes. Well his results came back...and it was 7.2. Normal range is in the 4s so the doctor asked that he come back in and get it tested again. Thankfully, Chris could take him in and it sounds like it went much smoother. The results came back and it was 6.2, so we will have to go back in on November 27th and get one more test so they can see what his normal levels are. If he does have a hypothyroid he will take medication daily to regulate the hormone. If it is not taken care of, it can have negative impacts on his cognitive development, joint health, and metabolism.
We also found out today that Jack will need to have an EEG done. We found that on a few occasions he was shaking his head back and forth, almost like he was shivering, just for a few seconds and then it would stop. I had seen a clip on Noahsdad.com to be on the lookout for infantile spasms and when I saw Jack do this a couple times I thought we might need to bring it up to the doctor. This test will be done also on the 27th down at Children's.
We also found out today that Jack will need to have an EEG done. We found that on a few occasions he was shaking his head back and forth, almost like he was shivering, just for a few seconds and then it would stop. I had seen a clip on Noahsdad.com to be on the lookout for infantile spasms and when I saw Jack do this a couple times I thought we might need to bring it up to the doctor. This test will be done also on the 27th down at Children's.
I just recently read in my journal from last year that on this date we had found out from the ultrasound that our baby was going to be a boy. I often reflect on the numerous ultrasounds that I had with Jack, reminding me that if God wanted us to have known he had Ds before birth then some indicator on at least one of the four would have shown something for them to recommend considering additional testing. God knew that Jack would be our second child, a boy, and created with an extra 21st chromosome. He also knows what our future will look like and it's a reminder not to be concerned about tomorrow.
So, as I stated in the first paragraph that I have been feeling a lack of balance with being both part time at home and teaching. There are times throughout the day that I keep thinking of how I can be helping Jack get stronger. This isn't just because he has Ds as I had similar feelings with Luke with it came to his development, activities and routines. I put a lot of pressure on myself. A lack of sleep and constant thoughts of what I should/could be doing don't mix well. Here is an example...the past couple weeks I have been traveling home to see my mom and dad because my mom had a major surgery. Well I kept thinking that Jack would be in the car seat again for the 3 1/2 hour trip so I was uptight that he wouldn't be working on his exercises. So my mind starting coming up with ways I could get him stronger in this car ride so I decided to make a stop on the way home and instead of keeping him in the baby carrier I got him out and carried him in front of me so he could work on his neck strength and posture. Goodness. I was hauling my 17lb baby in my arms while pushing a cart in the middle of Costco. Not only could I not get the things in my cart that I needed to but I got a few glances. Then my thoughts went to...Listen people, my child has Down syndrome and I don't have time or interest in your reaction, we have work to do, so please move aside. I had a good laugh with a friend after reflecting how crazy I probably looked and it was good to put things in perspective. I can just hear my sister as she once asked me if I really ever relax. Ah, sometimes.
Well, Jack's therapy is increasing and I don't want to have all of my 'at home' time being spent at therapy. So Chris and I have discussed that I take an additional leave from teaching by taking another day at home. I am very excited about this, although the decision was hard based on a few things including the amazing insurance that we have through my job, loss of income, and additional expenses with appointments/therapies. So just when I was anxious about how we could make this work, I received an email from a contact at the University of MN asking if I would be interested in teaching a course 1 day/wk for 2 hours for the spring semester. This course would be teaching future educators what I do...teach elementary physical education! God always provides. He is providing me additional time with my boys which I am so excited about, income for the day I am taking off, and another example of how TRUSTING in HIM, He always has a better plan.
I could write so much more but I will finish with this song that I love. Here's my heart Lord by David Crowder Band. Click on the title and have a listen. Tears streamed down my face when this song was played after communion on Sunday. I absolutely love the worship at our church. This song was exactly what I needed to hear. Do I really give Him my heart and life? Or do I think I can do all of this on my own? Do I have more faith in myself than Him? Do I place more value in what the world views as good, worthy, and admirable? What is it that my heart desires? Who defines my value? Is my life my own? What is true?
I am found...I am Yours, I am loved, I am made pure, I have life, I can breathe, I am healed, I am free. Because You are strong, You are sure, You are life, You endure, You are good, always true, You are light breaking through. You are MORE than ENOUGH, You are here, You are Lord, You are hope, You are Grace, You are all I have, You are EVERYTHING.
Here's my heart Lord. Speak what is true.
