G-Tube study day.....
Jonah's got a long day ahead of him. We start with the G-tube study at 8:15 am; they are checking to see if his "balloon" is getting stuck in his pylorus. (I guess maybe I could pass science classes now) Then it is off to the cardiologist and then to "High Risk Clinic" where we will be seen by approximately 4 doctors. Lovely. At least I will probably get to see my friend Emily Kellner for a few moments today......it is her birthday :)
So.....7 and a half hours later we left MUSC. G tube study went well.....milk is just not emptying like it should from his stomach. Will have to leave him on his side when we can (like we do at night). Cardiologist and nutritionist think he isn't gaining enough weight (are they looking at the right kid?) So.....now we have to fortify milk with both formula and olive oil. YES....I SAID OLIVE OIL...
Can you say yuch! Plus is we only have to run his feeds for 15 hours now :) Essentially 1.5 hours on....1 off. High risk clinic will continue to assessed him to see if he meets developmental milestones. They were happy we already had Babynet and therapy (they don't understand Mama has a degree in Special Ed) Got to see Emily for her birthday and even eat lunch with her! Overall good day :)
July 3
SSI.....
Waited for 2+ hours today at the SSI office to let them know we don't qualify.....what's wrong with this statement? Especially after a representative said on the phone, "so let me get this right......your son is receiving a check and you don't want him to get one any more?". Sorry I told her.....he was discharged from the hospital in April....and no.....he isn't homeless....
At least my cousin Cori came to visit with her daughters Taylor and Kendall. That made it better :)
July 4
Lily and Jonah decided that they didn't want to see fireworks....they both were exhausted. Maybe next year:)
July 8
Watching Jonah try to sick his thumb while kicking his legs and making happy noises. I can't tell you how much joy this brings to my soul. I am so happy with his progress and thank God for the gains he makes daily!
July 9
Jonah is finally wearing 3/6 months clothes. Go chunk!!!'
Jonah sleeps with his favorite monkey every night. Thanks Anne DeVenny O'Sullivan! He loves it :)
July 13
Jonah is 4 months today!!
July 14
Jonah has a fever....probably from his 4 month old shots yesterday :(
July 16
Jonah finally found his tongue ....he can't stop playing with it in his mouth!!
July 17
He finally gets to "sit up" in his swing now!!
July 19
Swallow study......no swallow study :(
So evidently we had an appointment at 1pm at MUSC, however because of the new appointment system MUSC has, they confirmed a 2:20pm appointment. Therefore.....we missed our swallow study. Guess we will have another trip downtown another day :( Luckily his xray looked ok and his echocardiogram looked the same....We are going to try and switch his formula to see if it is gentler on his stomach. Looking forward to the cath on the 1st of August.....the closer to that date.....the closer to the surgery.....the closer to the end of biweekly visits :)
July 20
Jonah's speech therapist was able to schedule his swallow study Monday at 130 with herself!!!! Yeah!!!!
July 23
Swallow study
It has been a fun week, as Lily was sick the end of last week into the weekend. Jonah did fairly well. He comes close to aspirating every time he swallows, however never does :) He has a VERY DELAYED swallow, so that helps answer alot of questions. This is good to know, especially when we start working on mouth feeds even more...after his next surgery. We have a GI appointment Thursday. They switched his formula and started a different acid reflux med. He SLEPT through the night Monday night for the first time ever. Luckily every time I was up and he had a wet diaper, I was able to change him in his sleep and rock and he never woke up. Last night his reflux acted up a little, but I really think this formula is better for him. I praise God for his progress!
July 26
GI appt
So today we had a GI appointment with an AMAZING doctor!! He listened to us and Jonah loved him. We found out Jonah has a milk protein allergy. The good thing is he will outgrow it by one year. No biggie. We just have to switch his fortifier (ie formula) and I have to avoid milk and soy. Overall, we are so happy with todays appointment. Sad I have to donate a freezer full of milk, but glad that his stomach will be happier now :)
July 29
Mommy and Daddy's first date night in a LONG time!!
Thanks to two amazing neighbors, Chris Smith and Jeremy Smith, Linn and I were able to go on our first "date" since Jonah was born.....and since December 2011! Lily and Jonah did great....and even better Mommy did too! We had an amazing time with our friends celebrating the marriage of Marjorrie Householder Walton and Jon Provost. Thanks guys!!
July 31
Less than 24 hours until Jonah's heart cath and MRI. He had a terrible night sleep with acid reflux and Lily woke up with a fever.....no stress :)
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