PT & NG Tube

I HEART MOM ;)

My First Valentine's Day

Picking up where we left off.....we were pleasantly surprised to be released Tuesday afternoon. Tash’s CRP continued to decline and he appeared to be feeling well. I always have mixed feelings to be inpatient, our 2nd floor nurses love Tash, the feeling is mutual, and we love them. They take great care of us inpatient, he is monitored closely, and we know the doctors are reviewing his counts daily. However, all of that comes with poking and prodding from the doctors, a jacked schedule for him, and sleepless nights for all of us. I swear he can sense when the blood pressure cuff is coming for him, its instant sad face. After a couple rough nights at home, we settled in to more of a routine. Pap arrived on Friday and worked to get us organized at the Target House. Mom and I truly hadn’t been here much to prepare for his arrival so he had his hands full this time. 

When Jonathan was here he noticed that Tash wasn’t moving his legs any more. When you change his diaper his legs are lifeless. He does move his feet so we were not fearful of a paralysis situation but are concerned in terms of physical development. In addition to no leg movement he no longer has any strength in his neck (aka Bobblehead - for real). We voiced our concern to the team here and they immediately set us up with the folks in Physical Therapy. The PT team agreed this is a pivotal time in his development and we are now scheduled for PT three times a week to work on strengthening his muscles again. The chemo had truly done a number on his body and any strength he had when we came in was gone. The team mentioned that with the older infants/toddlers they often stop walking during treatment and are referred to PT as well. Yet another reminder of how potent these drugs are that we are pumping into our children to heal them. 

PHYSICAL THERAPY

I was a bit down a couple of days this past week. We met with our nutritionist, Tash’s weight and height are not aligned and he is in the 3rd percentile of children his age. I wanted to say, yeah, well how many of those children are battling cancer, taking chemo, and vomiting multiple times a day?!?! But yet again I refrained. Up to that point he had maintained his baseline weight, frankly I was thrilled that his weight wasn’t declining. The nutritionist briefly mentioned an NG tube (A nasogastric tube is a narrow bore tube passed into the stomach via the nose. It is used for short- or medium-term nutritional support) and I think she could see the horror on my face. Not only is that another foreign object inserted into his body creating another source of infection but I felt solely responsible for his lack of growth. After all I am his single source of nutrition. No one tells you how difficult breastfeeding is when you have a baby. I take great pride in the fact I was able to nurse each of my children, it was not easy, it is not easy but I wouldn’t change a thing. So while the nutritionist meant nothing offensive (her focus is his nutritional supply and growth) I was offended. Again, my issue....not theirs. I spoke with Dr. Gruber she seemed to be in agreement with me, if he is maintaining his baseline weight then he’s okay. He is not a “normal” infant and his growth curve is going to look different. But, as the week progressed outpatient his weight began to decline. Mom and I knew it was coming, we were coming off the Ativant experience and honestly he still isn’t anywhere near feeling better. His better days just have less vomiting and fussiness then the bad days. He was looking frail and we could see it. I was crushed when his weight dropped to 4.5kg (9.9lbs). He was 8.5 lbs at birth and he’s 3 months old. I had a moment where I was looking down at him, between his weight loss and lack of muscle development, my boy had reverted back to a newborn. I don’t know why but this broke.my.heart. I suppose its because you imagine your children to be thriving and growing strong, and mine was going backwards and I don’t know what I can do to help him.  

On Friday we had clinic visit with Dr. Gruber, Sarah and April (our Dream Team). Dr. Gruber said Tash looked "perfect" and "this is as good as its gets". Meaning he had only a few mouth sores, his bottom breakdown was minimal and he was in good spirits. I constantly wondering how he compares to other infants on the same protocol, so its always nice to hear a good report from his primary doctor. Tash did need a blood transfusion and platelets, getting both of those on Friday would allow us to have the weekend off. Hallelujah! So we loaded him up with blood and platelets and headed home for a quiet weekend. 

Quick update from today (Monday): Tash's weight has increased back to 4.7kg, he is trending the right way. Praise God. His ANC is still zero, but hemoglobin looks good. He will need platelets tomorrow. We are hoping for a good week so his body can recover and we can begin the next phase of treatment. We savor these good days and thank everyone for the continual prayers and love. 

Walkin' with Mimi

Rockin' with Pap

Visit from Ms. Hayley

My Valentine

We are #TASHTUFF!