I make 96 ounces of formula each day, not including what Layton drinks. I have made this as simple as possible so that I’m only mixing it 4 times a day. It’s super easy and quick.
Next time I will only have to add water to the line, no measuring.
This batch will last for 2 of Gage’s feeds or one of Gage’s and 2 of Tinleigh’s.
I keep a corner in our kitchen just for the kids supplies and meds. There’s really no sense in hiding it away in cupboards because I’m constantly using it. During bad times the perimeter is lined with prescriptions and breathing treatment meds. This picture is on a good day, just the basics.
We can’t make regular gingerbread houses so we improvised. I found these giant cardboard houses at walmart for under $3. I pulled out the glue and craft things we had on hand, then let the kids go at it.
The boys really got into it.
Gage said his had a code you needed to get in.
Charlie’s was just a good old-fashioned Christmas.
Poor Tinleigh feels like crap today. Asthma is flared, throat hurts and she has a fever. Praying for an overnight bounce back.
Nippy is our elf.
With heavy heart I learned he has been fighting a silent battle with EoE.
We had no idea.
I thought the rosey cheeks were normal but turns out it’s eczema.
He definitely chose the right family to join.
Last night Nippy Twinkle Toes underwent surgery and he received a feeding tube just as Gage and Tinleigh did. His EoE was out of control and they couldn’t get his numbers down. We are really praying for a clear scope for Nippy come March.
We wish Nippy the best of luck.
Check out Cradle the Moon for your elf bookbag.
Little miss turned 9 months recently. I’m feeding her every baby food available minus those with dairy or fish. Shes thriving! She met with GI this week and the decision is we will wait until she’s showing signs of the disease, such as choking. We’re keeping our fingers crossed that Layton may escape the issues the other 3 carry.
Two years have passed since Gage had his tube placed. It seems unreal to me. I have a 6 hear old with a feeding tube. Never in my life did I imagine that happening.
Gage is now over 50 pounds. If I remember correctly, he’s gained almost 20 pounds in two years. As a baby and toddler, before all of this started, he was always in the 70% range for height and weight. He dropped significantly when we had to start eliminating his diet. I’m so happy to say he’s back to 70%.He and I had a quiet moment alone tonight. I told him it’s been 2 years. I asked him how he felt about his tube. Shockingly, he said he likes it because he doesn’t have to eat. Then he giggled. I said you don’t want to eat? He laughed and said no, I like to eat, but doing a bolus is so fast. Then I don’t have to sit there. I’m so happy he’s at peace with it. For quite a while he always said he wanted it out. I’m sure he still does, I didn’t ask him though.He’s been trialing corn since June. I think it’s going fine. He doesn’t have any symptoms and doesn’t appear to have an Ige allergy to it. He will be scoped in January to see if it’s a pass or fail. Gage was at 7 foods on his one year anniversary. He’s now eating: green beans, strawberries, blueberries, lemons/limes, oranges, rice, tapioca, cocoa, black olives. Fish is up in the air and he’s trailing corn. So he hasn’t added much. He had one pass last year then one fail. So he had to remove those trial foods which were pork, tomato and cherry. We got him back to a zero count scope before starting corn. Since moving and finding new doctors he’s been trialing corn about 6 months which is way longer than usual and another reason we didn’t get to add much this year. Gage has had a few strong Ige related problems since we moved. First one happened this summer on my parents farm. Gage went for a ride in one of the farm vehicles. They had been planting soy beans. My kids have been around the farm plenty of times and never had an issue. So off they go then back comes Gage. Swollen eyes and coughing horribly. It is safe to assume now that he has a strong soy allergy. We had never had this problem in the past. Allergist did tell me that once removing things some allergens could become worse if he comes in contact with them. Gage’s peanut allergy has also become worse since diagnosis. We showered him down, gave him Benadryl and an albuterol treatment and he was ready to go play again. No more vehicle rides though.Another reaction Gage recently had was to salmon. That was horrible. We still haven’t tried any fin fish again. I think we might do it at the allergists office. Overall Gage has not let this tube slow him down. He’s still LIVING life to the fullest. Sure we’ve had our moments of he wants this or that. “It’s not fair.” “Just let me try a little bit.” “No I don’t want a book bag/bolus.” Those are the crappy times we are going to have while we fight this battle. It breaks my heart every time I have to tell him no and be a stern mom. It’s my job though to keep him healthy and safe.
While we moved across a few states this summer we got the meet a special little tubie friend whom I had only met on Facebook. It was very exciting for them all to see each other and know they’re not the only one. Gage played on the beach Had a shaving cream fightSwam in a lakeHad a bonfireFlew on a planeSwam at the local poolExploredHe even got to go out to eat!He went trick-or-treating
These four kids are so lucky to have each other. They love one another. When it comes to food and this darn disease, they have so much compassion for each other. They comfort one another, they help give explanations and hope when food is present they can’t eat. They talk about needles, shots and IV’s. They talk about “one day I’m going to eat”. I hate they go through it, but I’m glad they’re in it together.