As Malachi continues to become more stable we find our weeks becoming easier and easier. He can now sit in his home seating systems for up to 30 minutes at a time, allowing me to do the dishes, shower, or just be hands free for a bit. There was a time not too long ago when even 30 seconds of sitting by himself would cause Malachi to vomit and have seizures! We still keep him in our sight always, including a video monitor on him at night but emergency moments are few and far between.
Although our life has slowed down tremendously we still keep a pretty rigorous weekly routine with appointments and therapies. Here is an example of the chaos we have to keep track of…each month I do what we call “the great calendar switch” and change it over for the next month. I could not survive without this whiteboard!
This week was no exception and we started strong Monday morning with a trip to the hospital to see the Gastroenterologist (GI specialist). This particular doc and I have a great relationship even though we have had our share of disagreements haha.
Malachi was diagnosed with “Failure To Thrive” when he was discharged from the NICU as they were worried about his ability to gain weight and grow at a healthy rate. Our first GI appointment immediately jumped to a G-tube conversation which I was adamantly against. Yes, he was very very hard to feed but I just felt if we worked hard enough his little brain may be able to rewire itself and he could learn to eat. The doctor very skeptically agreed to postpone tube talk and gave me a chance to prove him wrong.
Oh boy, did he learn how to eat! And he ate and ate and ate (bottles only) until he was overweight. In December Jake and I made the decision to cut back his calories a bit and switched him to almond milk/fruit and vegetable smoothies. He lost a bit of weight, but we truthfully don’t focus on the numbers but rather on him visually looking healthy. About a month ago Jake and I noticed he was looking a little too thin so we bumped up his daily calories by adding some meats and one snack with a sugary soy milk per day.
He is slowly gaining weight, and we half expected to get chastised on Monday at the GI appointment. While the doc wasn’t thrilled he trusts us to get him back on track. He is still under the first percentile for height and weight but his BMI is in the 91st percentile.
After his GI appointment we headed to hippotherapy and Malachi ROCKED it! He had a nice little cat nap in the car along the way and he was ready to ride. I took a few videos for you so you could share in his joy.
Tuesday we had an appointment to check on Baby C. Everything looks great! We talked a bit about the anti-Kell antibodies that I now carry and he explained that I need to make sure to alert doctors and nurses anytime I am scheduled to have a surgery or in an emergency situation as any blood I might receive needs to be tested for Kell. If I receive another Kell positive (Kell antigen) transfusion it will cause me to be extremely sick. We will have our next high risk appointment in about a week and a half and they will (hopefully) be able to tell us the gender if Baby C cooperates.
My pregnancy nausea has been very active this week, but comes and goes in waves instead of remaining constant. Grocery shopping is proving to be a waste of money as the things I buy sound and taste disgusting to me by the time I cook them. On Wednesday Jake and I went back to the local restaurant that doted on Malachi last week…
He loved seeing his sweet friends again!
Yesterday was another bad nausea day and we had some errands to run in town so we decided to use a gift card to Outback for a late lunch. The place was pretty empty but there was an elderly couple sitting a little ways away from us. I have learned that when you get to a certain generation, they tend to have different views about kids like Malachi. Often times they will use language that could be taken very offensively, but I don’t get upset as I know that in their generation children like Malachi would be placed in an institution rather than raised in the home.
I noticed this particular couple kept glancing at Malachi, and I just couldn’t read their emotions. His body language seemed almost annoyed so when they got up to go I braced for them to say something or give us a look. As they quickly walked by, the wife stared at Malachi and her husband leaned down and put his hand on Jake’s shoulder. He whispered “God bless you” as he continued to walk and intentionally dropped a $100 bill on the table!!
I can honestly say that I did not see that act of kindness coming at all! They were gone by the time we processed what had happened and we both got tears in our eyes at their selfless act and kind words. They way they kept looking at him made me think that their lives had at one point had a “Malachi”, as they just couldn’t seem to take their eyes off of him.
There are such kind people in the world.
Our week was full of other big adventures…Jake fighting a black widow spider, a flat tire on the van, and other little adventures. Just a little bit of “life”.
On Wednesday we will pack up 25 kids and chaperones and head to South Carolina for the week for youth camp. It is always an adventure and I am very curious to see how this year will go with a pregnant Leah and an older Malachi. I am making my mental and physical health a priority this year so there may not be midnight pizza parties with kids like last year, but they will survive haha!
This was a “Faith Over Fear” week for me. I have been able to remain very positive and hopeful throughout this pregnancy but for some reason things changed a bit this week. I started to wonder if I would get the chance to meet this child on this side of heaven. I also found myself feeling the baby move and said to myself “don’t allow yourself to get too attached”. My faith is beginning to be challenged in big ways.
The “what if” games have begun and the lack of control I have over this whole situation is enormously frustrating. Yet again we find ourselves in a situation that strictly involves having a level of faith that is strikingly hard to reach. This week I have been praying desperately that the Lord will renew my faith and make it soar like the eagles.
Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
This verse is so incredibly applicable for me this week, and has the answer of what I need to be doing. I simply need to hope in the Lord and allow Him to fill my fears with His presence and strength.
Please keep us in your prayers this week as I continue to fight the attacks of the devil on my thoughts. Also pray for strength and quality rest as we embark on a big adventure with the youth group. I am sure I will have all kinds of crazy stories to share with you next week!
Jake, Leah, and Malachi
2 thoughts on “A Little Bit Of Life”
Look at Malachi riding on a horse that is Trotting!!! That is very, very impressive!
I had a calendar like that once – – – 17 years ago when my girls were in school and my mom was on dialysis. It was color-coded, too. Instead of a white board, we used a large desk calendar that hung inside my pantry door. Your white board makes sense because you don’t have to copy things over from month to month – – and you have the flexibility of just erasing when an appt changes.
You have the antibodies that our first child is named after! lol… Yes, Kelly is named after Kell, and CJ is named after another blood antigen, Colton. 🙂
So wonderful to see Malachi’s personality blossoming more and more… what a special kid he is!