Seamus had his 1 year well visit today. He's doing great. 22 1/2 pounds (65th percentile) and 30 3/4 inches long (80th percentile).
We took away his bottles last week and he now drinks from sippy cups exclusively. He's also drinking whole milk. Sometimes he fools around and takes big mouthfuls of milk and then lets it run out of his mouth onto his bib. That's my cue to remove the cup. When he's thirsty, he'll drink. When he's not, he'll play.
He loves finger food and feeding himself. He continues to become more steady on his feet. Right now both kids are playing together. Eve is in her wheelchair touching his head and shoulders and he stands at her side, holding onto her tray. It's sweet.
Monday, July 30, 2012
Saturday, July 28, 2012
Seamus is 1!
Seamus had his first birthday this week. I just can't believe it. This year has gone by so very quickly. Here are some birthday and bath shots.
Tuesday, July 24, 2012
GI update
Well, as the doctor said today: we've turned a page.
I took Eve to the GI doc today to discuss the trouble she's been having with eating lately. I think very few of you know just how difficult meals are for all of us. It takes forever for Eve to eat, and much of the food just falls into her bib. She barely drinks more than a few sips here and there and now gets most of her fluids through her g-tube. She's lost weight since January.
Dr. A says it's time to give her the bulk of her nutrition through her g-tube and to let her have some food for fun. He's suggesting she get 4 bolus feeds through the tube daily and that she have about 200 calories by mouth (e.g., applesauce or pudding or whatever). He also wants to check her out to make sure there isn't anything else going on that is treatable so he wants to schedule an endoscopy. The endoscopy and whatever results are separate from the decision to put her on formula however.
Although I cried in the doctor's office, it really is a relief to not torture her (or ourselves) at meals. It's such a mixed feeling. Relief that meals will be easier; sadness that we need to acknowledge this regression. I've always known this was going to happen, but it seemed so far off. Just like I know that one day she'll need a feeding pump (rather than bolus feeds), but that just seems so far off.
I will say that when we got the g-tube 3.5 years ago we were convinced for a long time that we acted too quickly. However, I truly believe we did the right thing. I cannot imagine putting her through that surgery now. I'm so glad it's in place and ready to use.
I may have mentioned earlier, we've started looking at wheelchair vans. Start buying lottery tickets, people! We saw some sweet rides. Our backs can't wait.
I took Eve to the GI doc today to discuss the trouble she's been having with eating lately. I think very few of you know just how difficult meals are for all of us. It takes forever for Eve to eat, and much of the food just falls into her bib. She barely drinks more than a few sips here and there and now gets most of her fluids through her g-tube. She's lost weight since January.
Dr. A says it's time to give her the bulk of her nutrition through her g-tube and to let her have some food for fun. He's suggesting she get 4 bolus feeds through the tube daily and that she have about 200 calories by mouth (e.g., applesauce or pudding or whatever). He also wants to check her out to make sure there isn't anything else going on that is treatable so he wants to schedule an endoscopy. The endoscopy and whatever results are separate from the decision to put her on formula however.
Although I cried in the doctor's office, it really is a relief to not torture her (or ourselves) at meals. It's such a mixed feeling. Relief that meals will be easier; sadness that we need to acknowledge this regression. I've always known this was going to happen, but it seemed so far off. Just like I know that one day she'll need a feeding pump (rather than bolus feeds), but that just seems so far off.
I will say that when we got the g-tube 3.5 years ago we were convinced for a long time that we acted too quickly. However, I truly believe we did the right thing. I cannot imagine putting her through that surgery now. I'm so glad it's in place and ready to use.
I may have mentioned earlier, we've started looking at wheelchair vans. Start buying lottery tickets, people! We saw some sweet rides. Our backs can't wait.
Sunday, July 22, 2012
Hi Bye
Seamus learned to wave today at Stop and Shop. He waved to the grocery bagger. He then waved to every single person buying their groceries as we walked past. It was so cute and made such an impression on people that as I was loading our groceries into the car, a car slowed down as the customers inside waved goodbye to him.
Tuesday, July 17, 2012
Happy Birthday, Eve!
Eve turned 7 yesterday. I really can't believe she's 7 years old. Here are some pictures of the very first year. It's so funny to see her change...she became more and more cherubic.
Here are some shots from our little party. Eve didn't seem too excited.
Neither did Josie.
Eve finally cracked a smile when Jim brought out Elmo with his party hat on. We then got a babysitter for Seamus and went out for Indian food (just Jim, Eve, and I). It was great. Eve loves this restaurant. It's quiet, so she doesn't get startled and she really likes the food. The manager was so great and brought her mango sorbet with a candle in it for dessert. Here's a shot from the restaurant.
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Doesn't she look thrilled?
All kidding aside, it's been a tough birthday. Similar to Christmas, Eve just didn't get excited. She's been so distant lately. When people talk to her (e.g., on the street) she won't even look at them, much less smile. She doesn't laugh as much as she used to. She doesn't smile as much. When the grandparents called on the phone, we used to be able to get her to laugh for them or at least smile at the phone. Now she just ignores the phone.
We've also been worried about her eating. She's not eating very much and she's not eating well. She is having such a hard time keeping the food in her mouth and manipulating it. She also has a hard time swallowing. This happens with easy to eat foods like cream of wheat. The past two nights she hasn't even finished her pudding after dinner (and she ALWAYS finishes her pudding). I'm going to have to call the GI doc.
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All kidding aside, it's been a tough birthday. Similar to Christmas, Eve just didn't get excited. She's been so distant lately. When people talk to her (e.g., on the street) she won't even look at them, much less smile. She doesn't laugh as much as she used to. She doesn't smile as much. When the grandparents called on the phone, we used to be able to get her to laugh for them or at least smile at the phone. Now she just ignores the phone.
We've also been worried about her eating. She's not eating very much and she's not eating well. She is having such a hard time keeping the food in her mouth and manipulating it. She also has a hard time swallowing. This happens with easy to eat foods like cream of wheat. The past two nights she hasn't even finished her pudding after dinner (and she ALWAYS finishes her pudding). I'm going to have to call the GI doc.
Tuesday, July 10, 2012
Monday, July 9, 2012
For a little over a month, Eve has been having these weird 'episodes' during which she starts calling out in short bursts that increase in volume and intensity. By the end she is giving a mixture of a grunt/cry/scream over and over again as her body tenses up. Her heart beats like crazy. It passes within a few minutes and it definitely appears to be pain. It looks like she is experiencing a sharp, intense pain similar to a crazy intestinal cramp. Actually, it reminds me of labor and a contraction. It lasts about as long. She's been getting about one a week, but she's had 3 in the last few days. Friday morning was a bad one. Then she had two on Sunday morning. We can rule out something poking her (like her diaper tab), because Sunday's second episode occurred while she was getting a bath. I don't think it's related to pooping. She hasn't been constipated, and we've seen her straining to poop - this is not that. So I took her to the pediatrician today. She looked at Eve, but is stumped. With a non-verbal kid it can be soooo frustrating. I truly feel powerless. We're working on an appointment at Boston Children's Urology clinic for September. I think she'll have urodynamic testing and an RNC done. Then hopefully we'll get to talk with the urologist. I'm actually hoping these episodes are related to something with her bladder function. Wouldn't it be great to have a problem identified so we can work on a solution? In the meantime, I'll continue to document her episodes and look for patterns. I feel like that's our life. Documenting and looking for patterns. I suppose when you are dealing with a disease that has no cure, that's what it is all about.
In other news, we've started investigating wheelchair vans. Oh boy. Just the gathering of information is overwhelming. It is inevitable that we will need one. Eve will grow out of her car seat (which she's not very comfortable in anyhow), and lifting her in and out of the car is so hard on us. Also, breaking down her wheelchair and lifting it in and out just sucks.
The kids are doing well. Seamus is nearly a year. He's 22 1/2 lbs already!! He is cruising like a champ and has been standing on his own when he isn't paying attention (He lets go to look at a toy and when he realizes he isn't holding on he loses balance). Walking will be right around the corner. He is still only rocking the bottom two teeth. No sign of the tops yet. He loves finger food. The other day he fed himself his entire lunch (graham crackers, a piece of cheese, and banana chunks). It's amazing to think that the day is coming that we won't have to feed two kids at once.
In other news, we've started investigating wheelchair vans. Oh boy. Just the gathering of information is overwhelming. It is inevitable that we will need one. Eve will grow out of her car seat (which she's not very comfortable in anyhow), and lifting her in and out of the car is so hard on us. Also, breaking down her wheelchair and lifting it in and out just sucks.
The kids are doing well. Seamus is nearly a year. He's 22 1/2 lbs already!! He is cruising like a champ and has been standing on his own when he isn't paying attention (He lets go to look at a toy and when he realizes he isn't holding on he loses balance). Walking will be right around the corner. He is still only rocking the bottom two teeth. No sign of the tops yet. He loves finger food. The other day he fed himself his entire lunch (graham crackers, a piece of cheese, and banana chunks). It's amazing to think that the day is coming that we won't have to feed two kids at once.
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