Monday, April 23, 2007
Sunday, April 22, 2007
Sleep and solids
Grant is catching on to our new sleep plan....kind of. Last night he slept from 9-3am straight! But, then at 3am he thought his day was supposed to start and has been wide eyed ever since! Doesn't this kid need sleep?!
One amazing thing that happened is that at 3am Grant took his bottle awake! He has not done this in months. It was very exciting. Please pray that he is healed and will continue to eat while awake.
Another thing we'd love your prayers for is eating solids. Grant is happily opening his mouth when the food comes near him, which is a great sign, but doesn't have a great suck/swallow because most of the time that he's swallowing food he's asleep (and it's reflexive). Our OT keeps saying, "It's not too bad," but he needs to learn some tongue control. He actually prefers to hold the spoon and feed himself- which consists of sometimes making to his mouth and other times hitting himself in the nose. It's not the most efficient way of eating, but it makes for some great pictures. (To be posted soon.)
One amazing thing that happened is that at 3am Grant took his bottle awake! He has not done this in months. It was very exciting. Please pray that he is healed and will continue to eat while awake.
Another thing we'd love your prayers for is eating solids. Grant is happily opening his mouth when the food comes near him, which is a great sign, but doesn't have a great suck/swallow because most of the time that he's swallowing food he's asleep (and it's reflexive). Our OT keeps saying, "It's not too bad," but he needs to learn some tongue control. He actually prefers to hold the spoon and feed himself- which consists of sometimes making to his mouth and other times hitting himself in the nose. It's not the most efficient way of eating, but it makes for some great pictures. (To be posted soon.)
Friday, April 20, 2007
Snuggles and bathtubs
Grant is making improvements in the area of his sensory struggles. For the longest time he didn't like to be held. Now he loves to snuggle and be rocked to sleep! He also used to really not like water. We had been doing sponge baths only until recently because he'd freak out when we put him in his baby bathtub. But, in Florida I started taking baths with him. (The pool was too germy, but we were in Florida, so we had to go swimming every day. :) )He really likes it now, especially when I leave the water running so he can run his hands under the spout and feel the water pressure. He can amuse himself with that until we both turn into prunes. Yesterday Jim sweetly asked me, "Are you always going to take baths with Grant, or do you think he can start going in the tub without you?" I think he was picturing a 13 year old boy being forced to bathe with his mom. :)
Back to life in Michigan
Grant is starting to eat more food again and do better at home now that we are settling into our routine again. I guess he must not like transitions or something. :)
I talked to the doctor yesterday about switching the times for Grant's medication so that Jim and I can get more sleep. Right now he takes 1 out of his 6 meds at 2am and lately we've been having to work pretty hard at waking him up to get him to take it. And then we have to work pretty hard to get him back to sleep so that he can eat while he sleeps. (Okay, I need to be honest- Jim is the one who does this feeding, not me...) Needless to say, that takes quite a chunk out of the middle of the night. So, we got our doctor's permission to switch the schedule to give him that medication at 8pm, 4am and noon. Grant tends to wake up for the day at 4:30am, so we can probably give it to him then. He is pretty close to getting enough calories during the day to make this possible. It would surely change all of our lives! We tried it for the first time last night and he still was up from midnight to 2am and then again a few hours later, so we're off to a rough start. But, at least we have permission to head in the right direction. Our prayer now is that Grant would sleep from 8pm-4:30am straight. (And maybe even go back to bed after his 4/4:30am meds!) :)
I talked to the doctor yesterday about switching the times for Grant's medication so that Jim and I can get more sleep. Right now he takes 1 out of his 6 meds at 2am and lately we've been having to work pretty hard at waking him up to get him to take it. And then we have to work pretty hard to get him back to sleep so that he can eat while he sleeps. (Okay, I need to be honest- Jim is the one who does this feeding, not me...) Needless to say, that takes quite a chunk out of the middle of the night. So, we got our doctor's permission to switch the schedule to give him that medication at 8pm, 4am and noon. Grant tends to wake up for the day at 4:30am, so we can probably give it to him then. He is pretty close to getting enough calories during the day to make this possible. It would surely change all of our lives! We tried it for the first time last night and he still was up from midnight to 2am and then again a few hours later, so we're off to a rough start. But, at least we have permission to head in the right direction. Our prayer now is that Grant would sleep from 8pm-4:30am straight. (And maybe even go back to bed after his 4/4:30am meds!) :)
Wednesday, April 18, 2007
We're Home
We made it home from Florida and Jim just got home from his business trip in LA. Grant grew almost 2 inches while we were gone and gained over a pound. Florida was really good for him!
Since we've been back (only 2 days) Grant has been eating only half of what he ate in Florida. I'm not sure what all the variables are, but even in his sleep he is refusing the bottle again. We started solids (rice cereal and applesauce) last night under the guidance of our occupational therapist. She said he did okay, but has some work to do in terms of tongue control and swallowing that he didn't learn because of struggling with the bottle. Please pray that Grant would take his bottle again and would quickly take to solids.
We're missing grandma and grandpa Niedzinski already and counting the days until they come to visit in June!
Since we've been back (only 2 days) Grant has been eating only half of what he ate in Florida. I'm not sure what all the variables are, but even in his sleep he is refusing the bottle again. We started solids (rice cereal and applesauce) last night under the guidance of our occupational therapist. She said he did okay, but has some work to do in terms of tongue control and swallowing that he didn't learn because of struggling with the bottle. Please pray that Grant would take his bottle again and would quickly take to solids.
We're missing grandma and grandpa Niedzinski already and counting the days until they come to visit in June!
Tuesday, April 17, 2007
Friday, April 13, 2007
Staying in Florida
We have arrived safely at G and G Niedzinski's. There are so many things so see and do here and Grant is being adored by his grandparents that don't get to see him as often. Tonight Jim and I went out on our longest date ever tonight (since Grant)- dinner and a movie! We're really enjoying our stay. Grant has been doing really well being able to get outdoors and being loved on by so many people. So, Grant and I are staying! Just a few extra days while Jim is in LA for business anyway. (He leaves in the morning.)
A few prayer requests:
1. That Grant would be calmer in the night and sleep for longer stretches. (He's eating more calories during the day now, which means less eating at night. But, lately he's been waking up hyper every couple of hours.)
2. That Grant would eat while awake.
3. That Grant would remain healthy and I would remain kind to all the people that try to touch him now that we're out and about. :)
4. That my flight would not be delayed and the trip back to Michigan alone with Grant would be extra smooth.
A few prayer requests:
1. That Grant would be calmer in the night and sleep for longer stretches. (He's eating more calories during the day now, which means less eating at night. But, lately he's been waking up hyper every couple of hours.)
2. That Grant would eat while awake.
3. That Grant would remain healthy and I would remain kind to all the people that try to touch him now that we're out and about. :)
4. That my flight would not be delayed and the trip back to Michigan alone with Grant would be extra smooth.
Monday, April 09, 2007
Grant loves Florida!
Our plane ride to Florida went relatively smoothly. Aside from hooking him up to the oxygen Grant did not seem to mind the flight. For a portion of the trip we put our tray table down (covered with a germ protector, of course)and put Grant on his back, so he could bat toys we held over his head. The three of us even managed to fall asleep for a bit all snuggled together.
You probably won't see a picture of Grant in his sunglasses on the blog because he hates them. :) The first day Jim brought him out to the beach with his bathing suit, sunglasses and hat, and Grant screamed and kicked the whole time. We quickly figured out that the beach is not his favorite place to be. But, he loves just about everything else in Florida. He loves to take stroller rides and look at everything around him. He is facinated by people and animals, especially dogs! They have live music playing much of the time and he loves to sit and stare at the guitar player. He is such a curious kid and I didn't realize how much only seeing our house and the hospital the last 4 months affected both of us!
Tomorrow we leave my parents' place and head to Jim's parents, four hours north.
You probably won't see a picture of Grant in his sunglasses on the blog because he hates them. :) The first day Jim brought him out to the beach with his bathing suit, sunglasses and hat, and Grant screamed and kicked the whole time. We quickly figured out that the beach is not his favorite place to be. But, he loves just about everything else in Florida. He loves to take stroller rides and look at everything around him. He is facinated by people and animals, especially dogs! They have live music playing much of the time and he loves to sit and stare at the guitar player. He is such a curious kid and I didn't realize how much only seeing our house and the hospital the last 4 months affected both of us!
Tomorrow we leave my parents' place and head to Jim's parents, four hours north.
Wednesday, April 04, 2007
We're going to Florida!
The antibiotics have kicked in and I'm finally starting to feel better. Grant didn't catch the bug, so we're going to go to Florida for Easter. We'll get to be with both my family and Jim's family. What a treat! We'll have someone staying at our house to sign for Grant's medical supply pick up and deliveries. We'll probably have internet access in Florida so I'll try to post a picture of the little guy in his sunglasses.
Please pray for our airplane ride and that we'd all stay healthy. (Grant will be on oxygen for the air portion of our trip.) I'm so excited to get away (and have others helping with Grant around the clock. :) Thanks mom and dad Koss and Niedzinski!)
Please pray for our airplane ride and that we'd all stay healthy. (Grant will be on oxygen for the air portion of our trip.) I'm so excited to get away (and have others helping with Grant around the clock. :) Thanks mom and dad Koss and Niedzinski!)
Monday, April 02, 2007
It's strep! :(
I just got back from the doctor and I have strep throat. I have to stay away from Grant for the next 24 hours to ensure he doesn't get it. So, I am going to stay at someone else's house. Please pray for my mom and Jim as they care for Grant while I am gone.
We're pooped
Grant met his caloric goal for the second time ever yesterday! It felt great to know that he got all the nutrients that he needs to grow and gain weight. But, I have to say that feeding Grant around the clock like this for 16 weeks now is so wearing. Unfortunately, we can't sleep when Grant sleeps, because that is when we are feeding him. We really need him to turn the corner and eat when he's awake so that he can sleep at night and nap during the day.
We're both pretty darn exhausted and I woke up with a terrible sore throat. My mom is headed over so I can go to the doctor. Please pray for protection for Grant and Jim from sickness and for whatever I have to go away quickly. Thanks.
We're both pretty darn exhausted and I woke up with a terrible sore throat. My mom is headed over so I can go to the doctor. Please pray for protection for Grant and Jim from sickness and for whatever I have to go away quickly. Thanks.
Friday, March 30, 2007
Thursday, March 29, 2007
Two Steps Forward, One Step Back
We just got home from U of M after a long day of tests. To quote our cardiologist, "It looks like two steps forward and one step back." The positives are that Grant's veins do not seem to be narrowing (this happens sometimes after surgery and then another surgery is required), and his heart seems to be working great! So, he can come off oxygen all together. No more tape on his face and no more wrestling him at night to put on his oxygen canula.
The not so great news is that his lungs look worse than last time. The doctor put us on two medications in hopes that they help his lungs dry up. I guess that means that they are wet, but I didn't ask enough questions... So, he's giving us 12 weeks on these new meds to give his lungs a chance to heal on their own. If they don't, then we see a lung specialist. The major challenge with the medications is that they are diuretics, which means they drain the fluid from his body. As a result, it is easier to get dehydrated. That can be somewhat of a challenge for us because of Grant's eating issues.
The doctor did give us the go-ahead to fly to Florida. Grant will have to be on oxygen on the airplane because his lungs can't adapt to the altitude yet. I have also purchased seat covers, clothing covers, face masks and various other germ protectors. :) We'll be sure to take a picture of the germ patrol and put it on the blog so you can all have a laugh or two.
Specific things to pray for:
1. That Grant's lungs would heal completely.
2. That Grant would learn how to eat while awake.
3. That Grant would be protected from germs and lung problems while on the airplane.
4. That Jim and I would hear God, so that if He tells us not to go to Florida for some reason that He can see and we cannot, we would listen instead of getting to the beach at any cost...(which is very tempting at this point :) )
Despite all the poking and prodding, Grant smiled and laughed all day (and drank both his bottles) and brought smiles to all his old nurses who said that he is why they do what they do. We're feeling thankful.
The not so great news is that his lungs look worse than last time. The doctor put us on two medications in hopes that they help his lungs dry up. I guess that means that they are wet, but I didn't ask enough questions... So, he's giving us 12 weeks on these new meds to give his lungs a chance to heal on their own. If they don't, then we see a lung specialist. The major challenge with the medications is that they are diuretics, which means they drain the fluid from his body. As a result, it is easier to get dehydrated. That can be somewhat of a challenge for us because of Grant's eating issues.
The doctor did give us the go-ahead to fly to Florida. Grant will have to be on oxygen on the airplane because his lungs can't adapt to the altitude yet. I have also purchased seat covers, clothing covers, face masks and various other germ protectors. :) We'll be sure to take a picture of the germ patrol and put it on the blog so you can all have a laugh or two.
Specific things to pray for:
1. That Grant's lungs would heal completely.
2. That Grant would learn how to eat while awake.
3. That Grant would be protected from germs and lung problems while on the airplane.
4. That Jim and I would hear God, so that if He tells us not to go to Florida for some reason that He can see and we cannot, we would listen instead of getting to the beach at any cost...(which is very tempting at this point :) )
Despite all the poking and prodding, Grant smiled and laughed all day (and drank both his bottles) and brought smiles to all his old nurses who said that he is why they do what they do. We're feeling thankful.
The Big Day
We're off to Ann Arbor in a little bit for Grant's big day of tests. I'm feeling nervous because I want so badly them to tell us that Grant is totally healed. Please pray for all the details today, especially that Grant would eat while we are there. Because right now he only eats while wrapped tightly, sleeping in his cradle, which is tilted up at a 45 degree angle. I'm hoping and praying that he will eat in waiting rooms, in the car, in my arms etc. We'll email when we return with the results.
Monday, March 26, 2007
Ankle update
Just wanted to let all of you know who have been praying for my sprained ankle that it is healing really quickly. Much quicker than the doctor expected. I'm still in a splint and trying to stay off it, but the pain is much less. Keep praying. I'm hoping to be fully recovered before we have to walk miles around the hospital on Thursday for all Grant's tests.
Sunday, March 25, 2007
New Formula
Grant has had a great 24 hours. At the suggestion of another TAPVR mom, we switched to a formula that has rice starch mixed in already. Because it is thicker, the theory is that it is heavier and should stay in the stomach and not reflux. So far he is taking it well (asleep) and sleeping for longer periods at a time. (Up until now Grant's longest nap during the day was around 40 minutes, and that was rare.) But, today he took an hour and a half nap and seems really happy. The only problem is that after a long nap he's not tired again for a while and thus won't eat. So, we continue with our trial and error.
Grant has a really big appointment at U of M this coming Thursday. They will be running lots of tests on his heart, lungs etc. Depending on how things look on Thursday they could do anything from take him off all medications and oxygen (best case scenario) to sending us to a lung specialist (worst case). We are very optimistic and if all is well we hope to join our family in Florida for Easter!
Grant has a really big appointment at U of M this coming Thursday. They will be running lots of tests on his heart, lungs etc. Depending on how things look on Thursday they could do anything from take him off all medications and oxygen (best case scenario) to sending us to a lung specialist (worst case). We are very optimistic and if all is well we hope to join our family in Florida for Easter!
Friday, March 23, 2007
Good News/Bad News Part 2
Well,the good news is that Grant is taking the bottle from me again. (Still, while asleep.) The bad news is that I just got back from urgent care and it looks like I sprained my ankle pretty badly. I'm in a splint, on crutches and have to stay off it. I'm going to see a specialist next week. When I just called Jim to tell him he said all we can do right now is laugh. So, that is what we are trying to do....
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