Wednesday, April 30, 2008

April 30th, 2008 Carver's off O2 during the day

Big News!!

Guess who's off oxygen during the day....

Saturday, April 26, 2008

April 26th, 2008

We're back home. We were home by 7:00pm last night. We're all exhausted. The trip always wears us out. Carver escaped surgery again. Kinnick wasn't so lucky. Kinnick developed cateracts across 70% of her better eye. They had to remove the lens from the eye. They also did a small vitrectomy and put a small air bubble in the eye. This is why were weren't able to leave until Friday. We can't fly with an air bubble in the eye - air expands in flight causing eye pressure issues. There was some bleeding which complicates things, so we'll have to return to MI again in 3 months.

While in MI, we got to see our Micro-Preemie mom friend, Staci (Conner's mom). We had a some laughs and fun drinks one evening on our way home from the hospital. I also got to see my favorite RN, Sue. Her husband is having some health issues right now (which includes cancer) - please say a prayer for him. He's having a hard time being positive right now.

We had the same great service at William Beaumont Hospital - Royal Oak. The staff is just wonderful and the hospital is so clean. Once again, they allowed Carver to stay in Kinnick's room - using all Hospital supplies until we were ready to fly back to Wichita.

I stayed at my favorite hotel - Candlewood Suites in Troy. Dan gave me another fabulous deal on my room.

Here are a few pictures from the trip.

Kinnick taking a break from her seat during the flight - making sure Carver is doing ok...
Carver's IV - it looks like he has a broken leg. He's allergic to adhesive, so they had to wrap his foot/leg in gauze before taping it. It worked, no blisters from tape.
Kinnick - having a bad hair day...
Carver caught Hand/Foot/Mouth disease from older brother Hayden who brought the disease home from pre-school.... He handled it well, but looks terrible. He got a severe case - almost looks like he has chicken-pox! Kinnick appears to have caught the disease as of yesterday - just not as bad.
Again, thank you for all of your thoughts and prayers!

Monday, April 21, 2008

April 21st, 2008

Tomorrow is the big day. We will board our Jet at noon and will arrive in Pontiac, MI at 3:30pm EST. The flight is only 2 1/2 hrs, so it's not too bad. The ambulance drive is about 30 minutes from Pontiac to the hospital in Royal Oak, MI. I'm taking a friend this time to help in case we are sent back to the hotel. This also works as a nice insurance policy. It never fails...if you go prepared for the worst case, the best case will happen. We're hoping to come back surgery free Wednesday or Thursday. Please pray that their eyes have stabilized and no surgery is necessary at this time. I know Carver will require add'l surgery at some point, but hoping we have a nice wait.

I wanted to show everyone the cute Hawaii shirts that my micro-preemie mom friend, Yani (Sam's mommy) sent Kinnick and Carver from Hawaii for their 1st birthday. Thank you Yani!
Carver didn't want to have his picture taken. Each time, he either turned away or closed his eyes. Kinnick loves the pics, so no problem getting her picture.
We had another busy week. My 18 year old daughter, Kirsten finally got her senior pictures taken. Every time we schedule, we have to cancel due to weather. Sunday was a little windy, but we managed to get some good ones.
We also made it through a senior prom.
Lastly, I met with my boss this past week and our HR department at Koch. Koch and the employees of Koch Supply and Trading have all been so good to my family. They have all gone above and beyond any expectation of a Job or co-worker. I can't even begin to tell you everything they have done for us. We've been meeting about every 6 months to discuss when I might be able to return to work. We'll, it's been over a year since the twins were born and I haven't been able to return due to all of the twins needs. Koch has been very patient, however I am still unable to say when I can return. The twins still have so many needs that require my time. It's a full time + job just keeping up with their needs day to day. So, I've decided to leave Koch after nearly 20 years. I'm leaving on good terms and am very sad. I just don't feel comfortable going back knowing how often I would need to take time off to take care of the twins needs. I like to think that I am a responsible and reliable employee. I wouldn't feel responsible or reliable going back right now. Once the babies are more stable (off equipment) and the appointments and surgeries are minimal, I will apply for another position at Koch. Thank you Koch and all of the employees of Koch Supply and Trading for all of your support over the past year! I love you all and wish you all the best! Please visit our blog and drop me a line anytime.

Thursday, April 17, 2008

April 17th, 2008

Several things to talk about this week.

Let's see... Kinnick got her second tooth today... and still chewing on everything. Poor little Carver has none :0(

Carver has really been fighting his feeds since he received his G-tube. I'm not sure why. I've been trying all sorts of things to get him to bottle. He doesn't even want to eat his baby food. We've tried giving him a 5 oz bottle each daytime feed. Anything he doesn't drink, we push via the G-tube. We're lucky if he takes 1-2 oz of the 5 oz feed. Anything we don't get in him, we run via the G-tube while he's sleeping. I even held his nighttime feeds so he would be really hungry in the morning and that didn't work. He still didn't want to bottle. Does anyone have any tricks up their sleeve? I'm not sure what to do at this point.

My OT brought a splint for Carver's right hand this week. This will help keep his hand open. He wants to hold it in a fist all of the time. Hopefully this will help him to do more with his right hand.

We seen our ENT late last week. He's still recommending cochlear (bi-lateral) implants for Carver. However, this can not be done until Carver reaches 20 lbs. Our guess is that he should be close to 20 lbs when he is 1 year adjusted - July 11th. They would only implant 1 ear at a time with 3 or 4 months between implants. I'm told that it is important to have these done prior to 2 years of age. The brain needs these in place for developmental reasons ASAP. He agreed to another ABR hearing test prior to implanting. For some reason, I think Carver is starting to respond to loud noises. this is something that we weren't seeing before. I'm not sure we'll see a significant difference in the test, but it's worth looking at before committing to a major surgery that is not revers able.

I was able to get another RSV shot for the kiddos. My Pre-Auth through my primary insurance expired 3/31. However, Medicaid says they'll pay if my primary insurance doesn't pay. So, we'll be getting our last shots for RSV tomorrow.

Our trip to Detroit has been completely approved. We will leave Tuesday, April 22nd via a med flight. I'm hoping it's a short trip - no surgery. I'm not sure how many more times we'll have to return to see the ROP specialists. Hopefully the visits will slow down.

I managed to get my graduating 8th grader enrolled in his new High School. Thank you Bishop Carroll for allowing me to do this late.

I completed the MRDD (mentally retarded or developmentally delayed) application. This will allow me to get medicaid cards for the babies based on their delays without using our family income. My understanding is that there is currently a 2-3 year waiting list to receive the medicaid card via this program. However, the plan is currently being looked at to increase funds enough to allow everyone on the waiting list to qualify without waiting. I'm not sure how long it will take to get this approved, but I'm told it won't be 2-3 years. I'm hoping more like a few months. So, it is possible that if we lose our medicaid cards based on technology or income, we could roll to the MRDD program and keep our cards. The bad thing is that the MRDD program does not provide nursing. It does however allow me to hire my own help and the plan will pay their salary. It's not a great salary (I'm told $8-$9/hr), but it would help some of my costs.

Stacy and David....I hope we get to see you while we're in Detroit. We'll be on the Ped's floor.

Friday, April 11, 2008

April 11th, 2008

Kinnick has her first tooth! She's been chewing on everything. Today we finally noticed a sharp white tooth on her lower left center. She's been really crabby and can't seem to find enough to chew. Carver is starting to chew on his thumb and some toys. I'm guessing that he could have a tooth any day.

I've been feeling overwhelmed lately and even missed an appointment. I have no less then 15 appointments a month. This is the first appointment that I have missed. Somehow it didn't make its way to my planner. I was supposed to enroll my graduating 8th grader in his new school, Bishop Carroll Catholic High School. This is not a good thing since there is always a waiting list to get in if you do not enroll when you are supposed to enroll. The school was kind enough to allow me a special circumstance. They have scheduled a 1 on 1 enrollment next week.

I have a lot of extras on my plate right now, it's no wonder I missed an appointment. I have a daughter graduating High School, Senior Pictures, College, a son graduating 8th grade, a trip to Detroit for eye surgery which includes multiple insurance approvals (we have 3 insurances) and coordination of transportation and lodging, a trip to Mexico for my 40th birthday and all of the coordination involved with care for kids and the babies, and lots of extra work trying to keep my medicaid card going until the new TA waiver is in effect. I just found out today that they moved the go-live date for the new TA waiver from July 1st to August 1st...uggh. I also found out today that my insurance only approved my RSV shots through 3/31. We are due for a shot 4/18. I was told the season doesn't end until the end of April. So, we could be exposed for a couple of weeks. This stinks because even with the shots, Kinnick has gotten RSV in the past. I'm working with medicaid to see if they will pay even if my Primary insurance doesn't pay. I still have trouble with nursing staff. I now have 2 agencies trying to cover my case. The second agency is doing much better then the first agency. Oh, and don't let me forget the piles of insurance papers that I have to weed through to make sure that all of my medical bills are getting filed and paid - correctly. They are out of control. Most places don't even bill me. They bill the insurance companies and wait for payment before you ever hear anything. Most of my medical bills are paid by insurance, so it isn't normal to owe much. However, it isn't unusual to receive a bill from 6 months ago - unpaid. When this happens, I have to go through all of the claims that I have received to verify things were billed/paid properly or whether the insurance company has even received the bills. And...if you have ever been hospitalized... you know how impossible it is to know every bill you expect to receive. So, I have all of this on my plate plus my normal monthly appointments. This is why I'm feeling so overwhelmed.

Tuesday, April 8, 2008

April 8th, 2008

Well, Carver is now 16 lbs 1 oz!! It's so good to see him gaining some weight again. Kinnick weights 15 lbs 10 oz. Carver weights more then Kinnick for a change.

Other good news.... Kinnick is starting baby food and is doing really good. She has been eating at least 1/2 of a first foods container of squash per sitting. Just a couple of weeks ago, we were only able to put a little on our finger and she would lick it off. Carver hasn't shown much interest in any kind of food lately. He cries when offered baby food and only drinks about 8 oz of formula a day. We give the rest via g-tube while he sleeps at night. Medicaid is fighting paying for the pump that we use at night. They think we should gravity feed him during the day. Sounds good except the goal is to get him to eat as much as possible during the day. We want him to function as normal as possible during the day. The hope is to get him on full feeds during the day and give up the night feeds. Not sure how this one will turn out.

Carver playing in a new Birthday toy...

More Birthday fun...

Pretty girl Kinnick...

We're supposed to have 3 trees and 15 shrubs in our yard within 60 days of closing on our home. Well, it has been a year now and.... we're going to get in trouble soon.

Hopefully we'll have some after pictures soon. We finally hired an architect to come up with a plan. He'll have the final pics in about 3 weeks. It will take at least another 5 weeks after that to get everything planted. Bob and I weren't getting anywhere on our own. So, hopefully this will get us out of hot water.

Saturday, April 5, 2008

April 5, 2008

Carver is doing so much better now that he is getting better nutrition. It's amazing how much he has changed in the past couple of weeks. He's playing with toys (both hands), staying up later in the evenings, gaining weight by the minute (it seems), and is so much more playful. I can't wait until he gets weighted again. Dr. Knight (surgeon) weighed him with his clothes on this past Wednesday and he was almost 16 lbs. This is quite a jump after gaining an ounce or two the previous month. This is almost a pound in just a couple of weeks.

Kinnick continues to do well. Both babies are home and bug free!

We are preparing to return to MI to see our eye specialist. We will leave on April 22nd. Both babies will be admitted over night so they can be stablized prior to their sedation the following day. They will be evaluated while sedated on April 23rd. If surgery is needed, then they will do surgery on the eye of choice during the evaluation. If the other eye needs surgery, it will be scheduled within the week. It is possible that no surgery is needed. Please pray no surgery is needed. I'm working on a medical transport again. This time everything is falling into place quite nicely - much different from the last time we went. If all goes well, we will be home as early as April 24th.

We will be seeing Carver's ENT April 11th to discuss his hearing and where we go from here. My guess is that Carver will be scheduled for another ABR hearing test. If the test still shows that carver is profoundly deaf in both ears, we will discuss cochlear implants. This is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. Unlike hearing aids, the cochlear implant does not amplify sound, but works by directly stimulating any functioning auditory nerves inside the cochlea with electrical impulses. I've heard amazing success stories about these implants. If we can give Carver back one of his missing senses, then that is what we want to do. This could make a huge difference in Carver's ability to learn and the ability for others to teach him. Being deaf/blind makes teaching/learning very difficult. There is not a large community of deaf/blind individuals in the Wichita area, nor is there enough skilled professionals in the area available to teach Carver.