We had an appointment with our nurse practitioner at TCH yesterday, and after looking at his growth curves, she called the doctor to come see us. Because both his weight and height have leveled off over the last few months, they feel it is time for more testing and observation. He has gained weight, but it just is not as much as typical. His height has not increased much at all since June. At one point his height was in the 50th percentile and it has steadily dropped. While is weight and height are not on the charts, the good news is that his head has maintained it's curve at the 85th percentile! Ha! I took my sweet baby to try on one year old birthday hats, and none of them fit him. They were all to small! Oh, the irony...
Beckett will be admitted to Texas Children's on Thursday, and they will begin running more tests Friday morning...and with the way things work at hospitals, I am sure it will be bright and early! Uggg...because I am not a morning person. They are going to re-run many of the tests that we have done in the past to make sure nothing was missed. They are also going to do some new tests including one that will test how many calories his body burns in a day. That should be interesting. I have no idea how on earth that works, but I will be sure to let you know once I learn more about it. I am quite curious about that test. They will also count every calorie that goes in, and test everything that comes out for things such as malabsorption. This has been checked in the past, but they think it is worthwhile to collect all of his stool for at least 72 hours to make sure nothing is missed. The return of the feeding tube is a possibility, but they do not know how helpful that will be considering input is not a problem for Beckett. He does take a good amount of formula a day, about 1050 calories. This is significantly more calories than a baby his size should need to grow. As far as genetics go, his chromosome testing was all normal. So that is not an explanation for his small size. I will try my best to keep you updated throughout the process over the next few days.
Please be praying for Beckett and our family during this admission. Our prayer right now is for answers...answers that would lead to healing...healing that might land us in Italy. Please pray for emotional and physical endurance as we are all quite exhausted. Pray for wisdom and attention to detail for the doctors as they continue trying to figure out pieces to the puzzle. Please pray that just the right test would be ordered that would find exactly what we need to know about Beckett's little body. I spoke with the geneticist yesterday, and she said it is like looking for a needle in a haystack. Even picking each test can be difficult. Please pray for Beckett's body as it is subjected to more poking and testing. And sleep...please pray that my difficult sleeper would sleep in the hospital. Honestly, I am quite concerned about this as Beckett is very particular about his sleep. And he is very hit or miss...so prayers for sleep would be much appreciated. And our Brant, please be praying for him. Pray that he does not feel lost in all of this. Pray that he does not feel too anxious or worried as he is a very empathetic 4 year old. Please pray that Kyle and I will know how to balance Brant's needs with Beckett's needs.
Also, a quick update on Cincinnati- about two weeks ago, they decided they wanted Beckett's actual pathology slides sent to them for their own pathologists to look at. So after signing lots of paperwork, TCH sent the pathology slides and CCHMC received them last week. We are now waiting for the pathologist to look over the slides, and then we hope to hear the plan from the doctor there.
And in other unrelated news, Brant's new school year has been off to a great start. We are so thankful that he seems to really be enjoying school. He tells us that his "teachers make him happy." He willingly jumps out of the car in the drop off line (yes, I love it!) and walks into school with his backpack like a big boy. He has made some new friends, and I know it has been a positive experience. What a blessing and a praise! It is so wonderful to feel like he has a fun, predictable place to go while things at home are a bit chaotic. We are thankful!
Thanks again for your prayers! Praying for answers and healing during this week. Thankful for our God who is holding us in his hands during all of this testing. Thankful that God is BIGGER than this! I am so thankful that my help comes from our Lord the Creator who never sleeps.
I lift up my eyes to the hills--
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
He will not let your foot slip-
he who watches over you will not slumber;
indeed he who watches over Isereal
will neither slumber nor sleep.
Psalm 121:1-4
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