Well Graham has been home a whole month! We are exhausted, busy, and stressed. But we are home, all together, and we are soaking up every minute of it.
Graham's health has been stable. His blood levels are doing fine. His respiratory status is stable even after being off his inhaled antibiotic for 2 weeks. This may be the longest he has been off an antibiotic since October. He is going to the pediatrician weekly for weight checks and check-ups. Graham is gaining about an ounce a day which is great! The more he grows the bigger and stronger his lungs will get. He lost weight last week which thankfully seems to have been a fluke because his weight was back up this week.
He is tolerating his feeds well (no vomiting or pain) so we have increased calories. He is now on Liquid Hope + avocado + coconut oil. We have weaned him off several meds and are hoping to come off more meds soon. He was on several meds for issues relating to his feeding difficulties but all that has been resolved since getting on Liquid Hope. But the doctors don't like to make too many changes at one time, so we are trying to be patient.
The most exciting news is that a Duke speech therapist gave approval for a swallow study. Graham will basically eat and drink substances with barium dye on them so we can see him swallow on xray and see whether or not he can safely swallow without aspirating. The trach in the neck can affect swallowing and his vocal cords are still recovering from being intubated so long last fall through his mouth. Currently the only thing Graham can have is a chew stick dipped in water. He seems to swallow the water fine (no coughing or gagging). We are hopeful he will be allowed to start taking things by mouth again soon. The soonest Duke can get him in for the study is June 30 but I plan to call some other places on Monday to get him in sooner.
Matt and I have left the house at the same time a few times when we have a good nurse and grandparents at home with Graham. We have also taken Graham out a few times (other than to the doctor) to Pullen Park twice, to church for the babies' dedication on Mother's Day, and to the library for toddler story time. We bought a sturdy swing and rigged it to hang the vent on it. It is so thrilling to see Graham get to do some normal little boy things.
Meanwhile, the twins are 7 months old! Hallie is rolling all over the place and Ben is almost sitting up on his own. They are eating three baby food meals a day. Hallie prefers the spoon to the bottle. Hallie is loud and constantly making noise and Ben has a quiet soft voice and pipes up when Hallie gets tired and quiets down. In general Hallie is intense and Ben is laid back. Its so fun to see their little personalities forming!
In other news, we are under contract for a new house! It is a one-story house in North Raleigh. Moving Graham and his equipment up and down the stairs is burdensome. He is napping in the pack n' play in the afternoon downstairs and so we all have to tip toe around. A one-story house would make life much easier! We are excited about the house but there has been a complication with the appraisal coming in way lower than selling price. We are hoping things will work out in our favor and we will still be able to get the house. We are getting a second appraisal this week.
That's most of the news lately. Here are some pics:
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| Not sure how Ben got Hallie's sock in his mouth! |
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They love their daddy!
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| Mother's Day |
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| First time painting. He like it! |
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| Whale rocker at the neighborhood park. |
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| New swing! He LOVES it. |
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| Graham wanted to get in the baby exersaucer. Ha! |
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| Toddler story time at the library. |
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| On the carousel at Pullen Park. |
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| They let us ride twice in a row without having to get off. |
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| And we rode the train! So thankful for handicap accessibility. |
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| First time in the swing. |
