Saturday, September 27, 2008
Well, it's that time of year again. Birthdays. Hayden turned 3 last weekend. Kirsten turned 19 this weekend, and Harrison will turn 11 on Thursday. We're planning a party tomorrow. It hasn't been a very smooth ordeal. I didn't have nursing last weekend. I only had nursing 1 day the prior weekend, and I don't have nursing again this weekend. This makes getting out with Bob to get things done virtually impossible. We still don't take Kinnick and Carver in public places due to their lungs. I've managed to pull just about everything together. Kirsten picked the cake up for me today and .... the cake is messed up. They asked if I could bring it back to have it fixed. HA! I was lucky to have a few minutes of Kirsten's time to pick the cake up before she went to work. So, unless I want to pack both kids and the 3 year old up to take a cake (that requires 2 hands to hold) back to get it fixed, I'm stuck with a birthday cake for "KRISTEN" instead of Kirsten and a Jets helmet in the wrong colors. I'll post a picture of the cake after the party. I'm just really frustrated.
Speaking of nurses, my Monday/Tuesday nurse turned in her notice. She'll be moving out of state November 11th. So, if you know any good nurses that want to work in a home with 2 babies, send them my way. I have part time or full time available. I prefer that they work at least 2 days and preferably 2 days in a row.
Ok, I'm done with that.
Kinnick and Carver both got colds about a week ago. I'm not sure where the colds came from. Nobody else in the house has a cold. Carver's nose is so stuffy that he won't breath his O2, so I'm having a terrible time keeping him oxygenated. The doctor won't give him anything except a nasal spray due to his other meds and age. They're helping a bit, but I haven't had sleep for the last week. Kinnick's cold isn't bad at all. She's just up a bit on her O2. Neither of them want to eat. I'm not sure what has caused the setback in eating. It could be the cold or just new nurses that aren't familiar with their feeding and cause the feeds to take too long. They don't like to eat and certainly don't like sitting in the chair being forced to eat for lengths greater then 30 min. The lack of sleep doesn't help frustration levels.
I've been trying to decide on Carver's cochlear implant. We were given a couple to pick from. I've joined a CI support group and have been asking lots of questions and getting great feedback. I have a few more questions for the ENT/surgeon before making the final decision. We'll see the ENT/surgeon on Tuesday.
That's about it for right now. Kinnick is mad, so better run.
Thursday, September 25, 2008
Wednesday, September 17, 2008
Sleeping is going better. I think Kinnick had a stomach ache. Both of my kiddos have terrible constipation all of the time. Today and tonight has gone much better. Kinnick is in her bed playing as she normally does before falling asleep.
Our big news!! I got approval for Carver's first Cochlear Implant. I will meet with the audiologist, speech pathologist, and ENT September 30th to go over everything before scheduling surgery.
We met with the dietitian today to discuss K&C's calorie intake. We are increasing both by @ 140 calories per day. Hopefully this will get the weight moving. We had already increased Carver's by @ 200 calories per day and it didn't make a difference. I guess with all of his new rolling, he's burning more calories.
I also met with PT today, they are really not wanting to get Carver a stander to help put weight on his legs. She said she'll do it if I insist, but she really doesn't think he needs one. Well, I insisted, so she's putting it on the list for this year. We're going to try some sort of treadmill walking at the Rainbows center. She thinks this is all he'll need to start standing/walking. Kinnick is going to participate, too. She stands, but it might help get her walking. She says it's still a little early for this, but I really feel like they need it. They'll be 18 months old this month and Carver just isn't making much progress with trunk/head support and is making no effort to stand. We'll try this activity for 3 months. If it doesn't work, we'll try something else, then the stander. She still seems confident that Carver will walk. Obviously, I hope she's right, but I'm not seeing it. He's just so stiff in his legs. I've also scheduled an appt with one of the best developmental specialists in the state of Kansas. So, I'm hoping to get some good feedback from her. The appt isn't until February. This was the quickest I could get in. She's just really booked. If we were over 3 yrs old, we would have a 13 month wait to see her.
Sunday, September 14, 2008
Kinnick and Carver have slept through the night since they came home from the hospital. Well, tonight was the first night in the new bed. It is like Kinnick knows something is different. I put Carver to bed first and he fell right to sleep. Then, I put Kinnick to bed. She cried until I picked her up until almost 10:00pm. I started putting them to bed at 7:30pm. I don't know if she thought she was alone because Carver was sleeping and she didn't hear him yelling, or what was going on. Normally, she kicks him if he's not making noise and then smiles when he cries. I hope this isn't an indication of how she's going to do when Carver gets moved to the other bed. Carver doesn't care where he is - he'll sleep anywhere. If I remember right, she had a hard time sleeping when Carver stayed in the hospital after his G-tube and Fundo Plycation. He was there at least 5 nights.
Hayden is turning out to be quite the RT. He wants to help with the babies. He watches everything we do and then wants to do the work himself. Here he is giving Kinnick a breathing treatment.
We're starting to outgrow sharing a bed. I feel like they need a little more space to spread out. So, I moved the second bed to the bedroom today in preparation of putting them in their own beds. I hate separating them, but feel guilty about the space.
Thursday, September 11, 2008
A few things to post today. We seen our Neurologist yesterday. The Neurologist finally came right out and said that Carver has Spastic Hemiplegia Cerebral Palsy. It is debatable whether it could be classified as Spastic Quadriplegia Cerebral Palsy. The spasticity refers to the inability of a muscle to relax. Carver has a hard time relaxing his right arm/hand. He also has high tone in both legs with his right leg being a little tighter then the left. Hemiplegia is cerebral palsy that involves one arm and one leg on the same side of the body. Quadriplegia refers to a pattern involving all four extremities as well as the trunk and neck muscles. Carver struggles to lift his head and he is unable to sit. At this time, I believe she is classifying it as Hemiplegia. However, time will tell if it is more severe. She had us start Baclofen. This is supposed to help relax the muscles. I was really wanting to avoid using drugs, but she feels like the muscles are starting to get a little tighter. She believes the medicine will allow him more movement that will help increase mobility in the legs and arms. Getting good weight bearing on his legs and arms will strengthen them and allow better mobility. She says that as long as the dose is right, we shouldn't notice a difference other then in tone. I don't feel like I've seen a change in tone. I've only noticed that he is less likely to try to hold his weight up as he gets heavier. We're hoping the new medicine helps us move along developmentally.
Kinnick and Carver were weighed today. Kinnick has lost weight. She now weights 16lbs 12 oz. Carver is still not gaining, either. He weights 19 lbs. I'm not sure why we aren't gaining. They're both eating really good. We will see the dietitian next week. Kinnick is still 28 inch long and her Head is 43 1/2 cm (up 1/2 cm). Carver is still 28 1/2 inch long and his Head is also 43 1/2 cm (up 1/2 cm). So, not a lot of growth, but we still feel like we've made progress with our eating. Kinnick has even started sampling cheese puffs. If we could just get her to sample a Big Mac, we would have it made - HA!
Kinnick is just about over her cold. She's back to 1/8 lt oxygen. Carver is on 1/16 lt oxygen during the day and night. Winter is coming, so we're starting to avoid visitors (not that we allowed many anyway). They will get the synagis (RSV shots) again this winter. These will start next month.
We're still working on our list of equipment needs to request with the special funding MRDD has to offer. Thank you all for your suggestions. We're looking at all of them.
Monday, September 8, 2008
Kinnick's cold is getting better. We're still giving her a little extra oxygen, but she's doing much better.
Kinnick and Carver both qualify for a program called MMRD. This gives me a case manager and access to some funds once a year for equipment or other items that insurance might not pay for. The items have to be something that a healthy baby their age wouldn't need. This year they could qualify for up to $2,500.00 per child. The money is managed by my case manager. The hardest part is trying to come up with things they may need in the next year. Once we come up with a list, I need letters of medical necessity for each of the items along with pictures and prices. All of this has to be done by September 22nd. If anyone has any ideas, please share. I hate to let the money go if there is something we could benefit from that the insurance company won't pay for. I've asked for a stander for Carver to help him put weight on his legs. I'm not sure if they'll justify this or not. I'm also looking at highchair/play chairs with extra support and some sort of walker. I know we have a lot of vision and hearing issues, but I have no idea what we might need in the next year.
Below is a picture of big brother Hayden reading a book to little sister Kinnick. He borrowed Carver's bumbo.
Thursday, September 4, 2008
I don't have a lot to say today, but thought I would share some pictures.
Kinnick outgrowing her bouncy seat. Carver already outgrew his. Kinnicks will be hitting Craigslist.org soon. :o)
Kinnick learning to stand. She only stands a couple of seconds without help.
Carver with his football. His teeth are bothering him. He spends a lot of time chewing on his wrist.
Big brother Hayden with Carver. Carver sporting the haircut that he got today.
Carver in his bumbo working on head control. He still struggle to hold his head up. He's doing better, but still likes to rest his head on his shoulders. Did you notice the missing cannula? He went without his oxygen for a few hours today and did really good.
Kinnick having breakfast. Her bangs get in her food, so she's sporting a new hairdo to keep her bangs out of her eyes and food.
Kinnick being a big girl and sitting all by herself. She can sit for quite a while now. She's even starting to catch herself if she starts to fall. She should have this mastered soon!
Tuesday, September 2, 2008
Not a whole lot new going on in the Woolley house. Kinnick still has a cold. I had to increase her oxygen last night. We suctioned her today. This helped some. I'm not looking forward to winter. Last year was horrible. I think Kinnick spent more time in the Hospital then at home. I was hoping she would do better this winter. She's on a small amount of oxygen right now, but I know how quickly things go down hill.
Carver got his 4th tooth today. He has been such a little crabby guy. Hopefully he'll be back to his happy little self again. Kinnick is still working on her 4th tooth. It's still not bothering her. She started chewing on the highchair tray and the swing tray. It's really pretty funny watching her hunched over chewing on the tray. She also enjoys chewing on tags. We have an activity ball that has taggies on it, she turns the ball in circles looking for the taggies to chew on. The ball is soaking wet when I grab it to put it away. I need to get her a blanket with taggies for bedtime.
Carver is still doing good on 1/16 lt oxygen during the day. Hopefully he'll go to 1/16 lt at night soon.
Kinnick's new Mic-Key replacement - a "BARD" has been great. It's not nearly as convenient as the Mic-Key, but she's no longer able to push food out around the tube and it doesn't have a balloon, so no more worrying about finding her Mic-Key out. She rarely leaks with this tube, so her stoma has pretty much completely healed. We're hoping she'll start gaining a little more weight now that she's keeping all of her feeds and meds in her stomach.