Time for the first entry of the new chapter of our lives!
Levi has been home for over a month now and we are all adjusting well. The biggest thing he is still struggling with is weight gain. For four weeks he only gained 4 oz. I think at this age they are supposed to gain .5 oz a day so that’s really not good. On Monday last week we took him in for a weight check and the Dr. asked us to keep a journal of all he eats. On Friday I called her and said that it seems he is falling about 100-200 ml short a day but it’s hard to tell because he breastfeeds too. She said she wanted us to start fortifying but I didn’t because I don’t have any pumped milk. A friend is donating some but I can’t pump any and we go through the donations quickly.
But on Saturday we had to take Levi in because we thought he had an eye infection (he’s got clogged tear ducts). They weighed him and he had gained 4 oz since Monday!! I couldn’t believe it!! The only thing I had done differently was keep track and pray for him during each feeding that he would eat the amount he needed to to gain weight.
Yesterday and today he has been chowing down and I realized you can fortify formula, it doesn’t have to be breast milk so I think he’ll really start taking off now.
This was a big week in my discovering Down syndrome. Early Intervention Colorado (E.I.C.) brought a team to the house to evaluate Levi. They have an Occupational Therapist (O.T.), Physical Therapist (P.T.), and Speech Therapist (S.P.). I’ve been confused about what they do and why Levi would need them so they explained.
O.T helps people with specials needs build skills they will need for their occupations. At this stage in life, Levi’s occupation is to eat and grow. Because of this, when they are this young O.T. and P.T. tend to overlap and really either could do what we will need for Levi. The S.T. at this stage helps with eating because those are the same systems and muscles that are later used for speaking. But she felt overall he is doing really well with his methods so she won’t be coming weekly.
They were all REALLY impressed with his social skills. He makes eye contact and babbles and plays copy cat and tries to touch my face and laughs. They said they had actually done updated training the day before about what social skills are normal at this age and he does all of them well!! He has excellent skills when it comes to eating, things like pulling his hands in, holding my finger or the bottle, kicking his legs etc. are all methods babies use to organize themselves while eating but there is some room for improvement.
He has always had trouble doing “suck, swallow, breath” but they said he’s devised a way for himself by chugging about 14 sips then stopping to breathe. While it works well, it wears him out so he always falls asleep while eating. So they gave me a tip to try. We count and after 5 sucks we remove the milk from the nipple of the bottle by tipping the bottle down. This forces him to breathe. Obviously I can’t do this when he’s breastfeeding and he gets frustrated after a while so we only do it for part of a feeding, but so far it really seems to be helping him stay awake longer during feedings.
He does have low muscle tone. The Occupational Therapist (O.T.) explained that we are all born with a certain number of fibers in our muscles and that number never changes. Those born with lower numbers have low muscle tone and have to work harder to build strength (and that is now soooo my excuse!) but it can be done. In addition to giving us some more daily exercises to do, she is going to come meet with us once a week to help Levi and she is also taking me to an infant massage class. Infant massage can help stimulate the muscles and nerves, increase blood flow and help with weight gain.
My Dr. also sent out a message to few organizations to see if they can come to the house to weigh Levi once a week instead of me having to pack us all up, drive up there, sit in a waiting room and pay $30 to have him weighed at Kaiser. Three different people have called me and we are all trying to find something that works.
The Mile High Down Syndrome Association (MHDSA) also called me this week. They will be sending out a volunteer sometime. They also got me on the mailing and email list. In September they do a fundraising walk called “Step Up for Down Syndrome“. I’m going to do it this year but I really don’t know how. A friend did give me a few pointers and I started “Team Leviathan” (that’s our nickname for Levi!). We could put this scripture on the shirts : Job 41: 8-9 “8 If you lay a hand on him, you will remember the struggle and never do it again! 9 Any hope of subduing him is false; the mere sight of him is overpowering”. Just kidding.
But if you do want to register to walk with us or be a “virtual walker” (if you can’t come to the actual event but want to donate), you can do that here:
In other family news, Jayden’s face met a bookshelf at the library this week. He was running and tripped. He had to get three stitches in his lip. He was strapped to the table and his face was covered so only his lip was showing for the Dr. to stitch. Poor kid. There was really no way for me to make that situation better than it was but I did my best to comfort him. He’ll get his stitches removed on Thursday so until then, no swim lesson (I bet he’s happy about that).
My Professor has decided I’ve had enough time and asked if he could give my thesis materials to another student. My thesis was based on a theory of his but I had already done all of the research I needed, it just needs to be written. So I said I would do it and I got the feeling he is tired of waiting (and really rightfully so, it’s been a year). But I am having a REALLY hard time getting down to it. The boys keep me insanely busy. So starting next week (as long as stitches are ok) Jayden will go to daycare 3 days a week. Honestly I mostly want him to go because he’s really social and I think he’ll love it. We did a trial day last week and he didn’t even cry when I left and he didn’t want to leave when we all came to pick him up!
But I’m having a hard time actually WRITING the paper. I just stare at it. My brain is dull after so many months of not really being used for academic thinking… and I’m not getting much sleep or rest these days… and breastfeeding makes me dumb for some reason… so I’m not sure I CAN write this paper. =( I also have to take at least one class to stay enrolled at CU so I’m taking an online self paced class but I keep forgetting I have to actually DO it.
And for Josh- Beatport is the number one place in the world for DJ’s to get their music. The CEO asked Josh to come play a DJ set there and he did that on Friday! It was streaming Live on the internet but it was also recorded so you can watch it here if you want to hear some good music and this is his Facebook page if you want to follow what comes next. He was so excited to be playing in the same place as that some of his musical heros have played!
So things are crazy here and everything is moving at the speed of light, but we are all doing well and there is a lot of smiles and laughter in this house. We are just so grateful to be on this journey together and I am still blown away all the time by how miraculous Levi’s healing has been.