September 30th, 2009 Right Ear Cochlear Implant

It was a long day. We had to be at the hospital at 5:30am. They started Carver's Right Ear Cochlear Implant around 7:30am. They didn't finish until 10:45am. This surgery took longer then the Implant in his left ear. Carver did pretty good. He was having a hard time holding his oxygen saturations. So, we kept him on 1/2 lt of oxygen and still have him on oxygen. The surgery seems to make his lungs a little junky. He also broke out in a rash - an allergic reaction to something. So, that required extra meds and delayed us leaving as scheduled. We ended up leaving the hospital around 4:20pm. I was starting to get a little worried that they were going to keep us over night. I got a little cranky with the nurse at shift change, so the new nurse quickly got our paperwork and sent us on our way. I had no desire to stay in a hospital full of H1N1 kids - 9 were admitted this morning. The nurse was in such a hurry, she sent us home with Carver's IV still in his arm. Bob noticed it when we got to the car. I didn't want to go back in, so we just had Nurse Marci remove it when we got home. Having a Nurse at home comes in pretty handy.

Carver taking it easy at the hospital.

Carver, happy to be home.

September 29th, 2009

Tomorrow is the big day! Carver will have 2 ears!! I can just hardly wait! We have to be at the hospital at 5:30am - I'm not too excited about 5:30am. However, this just means he'll be done early morning and hopefully we'll be home early afternoon.

September 28th, 2009

Another Big Birthday party. We celebrated Hayden's 4th Birthday, Kirsten's 20th Birthday, Harrison's 12th Birthday, and Bob's 34th Birthday. My mom surprised us and came to the Birthday party along with my sister, Tonya and her Husband Bill. I was in charge of kids, not the camera :o)

Since Kinnick and Carver were in the NICU, we've started combining the Birthdays and Cakes. Hayden's Birthday is September 21st, Kirsten's is September 26th, Harrison's is October 2nd, and Bob's is October 14th. So, within a couple of weeks, we have 4 Birthday's to celebrate.

Yes, I know FARVE is spelled FAVRE and not FARVE. The decorator spelled it wrong. Apparently, she isn't a football fan :o)

Here's Hayden (4) and Kirsten (20)

Here's Harrison (12). I have no idea how Bob escaped the pictures.

September 24th, 2009

I received the Disability Determinations on Kinnick and Carver. The Social Security Administration had them to me prior to 9/30/09, as promised.

While neither of them is eligible for SSI benefits, they both met the medical requirements of listing 102.02B. These requirements are considered to have been met since birth. This listing qualifies them under "Blindness". They didn't even go into any other disabilities. It only takes one to qualify under Title II and Title XVI.

So, the next step is to get Cobra to accept this "Special Determination" and allow us to extend our Cobra coverage another 11 months. This battle starts tomorrow. I can already see a possible snag that may not qualify us. There is a section that talks about when the disability started vs when Cobra coverage started. I'm going to do my best to find my way over the hill. I'll keep you posted.

I'm getting really excited about Carver's CI that is scheduled for next Wednesday.

Both Kinnick and Carver have colds. They started right after they got their flu shots. Kinnick isn't eating very well, but her O2 requirements have been minimal - just needs it while napping or sleeping.

September 23rd, 2009

Kinnick and Carver went to the park for the first time....

Kinnick was a little unsure about the swing, but loves the motion, so she tolerated the new swing.

Carver enjoyed the swing with the help of Mom.

Kinnick really seemed to enjoy this swing. I would love to have one of these for home!

Carver obviously enjoyed this swing - he was so comfortable, he just about fell asleep.

Guess who didn't want to put her feet in the sand? Miss tactile defensive.

However, this little man had no problem digging his feet into the sand.

WHO helps us and WHY?

Having a special needs child can be financially devastating. We have 2 special needs children. There are many programs available for special needs children. However, many only apply to low income families. Finding programs that apply to families regardless of income do exist. They're just not as easy to find. We live in Wichita, KS. Programs vary by State and even by County in many cases. Here are some of the programs that help us and how we qualify:

TA (Technology Assisted) Waiver - Medicaid Card

This waiver program waives income and gives us nursing in our home to help care for Kinnick and Carver. Because Kinnick and Carver are technology assisted, they waive our income and allow them to be on the program. Their technology consists of continuous O2 (more then 8hr/day), G-tube feeds, suctioning if needed, and a variety of other items. This program is funded by Medicaid. Therefore, it also helps by giving Kinnick and Carver a Medicaid card. This is considered a disability qualification for the Medicaid card. Most private insurances do not cover nursing in the home. So, this can be a huge help. We have private insurance, but having Medicaid as a back-up has been a huge help. In addition to the nursing and Medicaid card, we also receive a Case Manager. This Case Manager assists me with all of my Medical questions/needs. She will attend appointments with me, gather medical records, does all of my paperwork to qualify me for nursing every 6 months, does "Can be Healthy" check-ups (well care check-ups), and many, many more things. She's at my fingertips for any questions I may have as they relate to Kinnick and Carver's medical needs.

Also, by having the Medicaid card, I can get travel expenses like food, lodging, and mileage reimbursed if I take Kinnick and Carver out of State for medical reasons. Considering how often we go to MI for eye surgery, this has saved us thousands of dollars.

MRDD (Mentally Retarded or Developmentally Delayed) Waiver

This is another waiver program that waives income and allows Kinnick and Carver to be on the program. This program will provide a Medicaid Card to a child (age 5 and over) based on being Mentally Retarded or Developmentally Delayed. Kinnick and Carver are not 5, so they do not qualify for a Medicaid card through this program, yet. However, there are other things that this program offers to children prior to age 5. There is special funding available every year that helps pay for items that are not covered by medical insurance. Last year, the program gave Kinnick and Carver over $4,000/per child toward the purchase of NEW equipment - Kaye Products Gait Trainer for Kinnick, Tumble forms Stander for Carver, and Rifton seats for both Kinnick and Carver. This year, they have $2,500/per child available for these types of items. They also pay for such things as Special formulas and diapers. Our formula is paid for via Medicaid because Kinnick and Carver have G-tubes, but for some, insurance doesn't pay for formula and it can be very expensive. Kinnick and Carver have both been on formula that costs $800/mth per child. At one time, I had to pay that out of pocket. Many are paying out of pocket for these things. The program pays for diapers if the child is at an age that a typically developing child would no longer be in diapers. In addition, this program provides me with a Case Manager. The Case Manager is very helpful in finding funding any time we have a special need. Kinnick and Carver qualify for this program due to their Developmental Delays.

Kansas Safe Kids

Rainbows United put us in contact with Kansas Safe Kids who provided car seats for Kinnick and Carver. Kansas Safe Kids and Rainbows United (together) custom fit special needs children in appropriate car seats at no cost to the family. They do this regardless of income. Kinnick and Carver were both given NEW Britax Boulevard car seats. These retail for $310.00 if purchased from a store. They qualified based on their disabilities and their need for special seating.

Rainbows United

Rainbows United provides early intervention to developmentally delayed children. Kinnick and Carver receive OT, PT, VT, AVT, SLP, and an early education teacher at no cost to our family. They will receive these services until they turn 3. At that time, the public school system will pick up these services. Kinnick and Carver qualify for this program based on being developmentally delayed.

Deaf/Blind Funding

Carver qualifies for Deaf/Blind funding due to being Deaf and Blind. You don't have to be totally Deaf and/or totally Blind to qualify. However, Carver qualifies because he is legally Blind and Deaf. This program provides funding for educational toys and equipment to help Carver's development. Our Vision teacher with Rainbows United completed the paperwork for us to qualify Carver. This is another program that does not take income into consideration when approving a child for the program. This program will follow Carver for many years.

So, there are programs out there that will help families that aren't considered low income. Without these programs, the expenses incurred for these items would easily devastate a family whether they are low income or not. I'm sharing this information to help others that might be looking for help.

As always, if you have any questions, my email address is on the left hand side of the screen.

September 17th, 2009

We still have a lot going on. I did want to show everyone the neat toys that Carver got from the Blind/Deaf funding. They fund educational toys, etc. for Blind/Deaf children. This organization will follow Carver through school and help fund things he needs to function in school. There are several other items on order. These are what we've received so far with the help of our vision teacher who works for Rainbows United...

These are his Jigglers. They vibrate. He loves chewing on them while they vibrate. He gets a real big kick out of them. The first few attempts to bite them brings a big smile to his face. I think they tickle him.

This is a flexible device that you can wrap around him and then he can use the switch (it lights up and vibrates when pushed) to activate the vibration himself.

This is another item that attaches to a switch. When he presses the switch, the bells go in a circle and ring (REALLY LOUD). He really likes the bells. The switches are great for learning cause and effect.

I can't wait for the other items to come in. These give Carver the ability to operate his toys by himself.

We're still working on getting funding for a Pony gait trainer for Carver. They run around $2,500. So, not something that you just cut a check for. The MRDD program has up to $2,500 per child available right now for items like this. So, we're hoping that Carver qualifies. We've also asked for several other items like a bath chair, swing, peanut ball, stair/slide/tunnel unit, and pedals for Kinnick's tricycle.

I'm still waiting on the Disability Determinations. We filled out paperwork today to continue nursing in our home. It looks like we'll continue to qualify. We have to do this every 6 months. This will also qualify us for the Medicaid Cards in December/January. We have to apply every year for the Medicaid Cards. Currently, we are qualifying based on disability - the nursing helps support the disability.

Carver is scheduled for his second Cochlear implant on September 30th. I can't wait to get his second ear. We've waited so long. I think it's going to make a big difference.

K&C are both scheduled for swallow studies October 19th. This will tell us how they manipulate their food and swallow it. It will also track the food as it goes down to the stomach. We're still concerned that Kinnick is getting food into the lungs due to her paralyzed vocal cord. Since the vocal cord doesn't move (out of the way), it can cause the food to go in the wrong direction. She's getting lung infections about every 8 weeks, so the thought is that it's probably due to reflux (fundo no longer working), or aspiration when eating.

Kinnick is scheduled for a PH probe, lung swab (to check for food getting into the lungs), and to have a look at the fundo on October 20th. This is a 24hr stay at the hospital, so I'm not looking forward to it. Again, this is an attempt to get to the bottom of the continued lung infections.

Carver is scheduled to have another sleep study done on October 27th. This is to see if the T&A removal cured his sleep apnea. So far, we haven't had any blue spells since he had them removed in July. He currently has a cold, so this will be a good test. The added swelling from the colds in the past would trigger blue spells.

Kinnick and Carver got their flu shots Tuesday. They will be getting the H1N1 shots when they come out next month.

We're still working on the plan for future therapy for Carver's hearing loss. We will meet a new Teacher of the Deaf next week. I'm hoping it goes well, but a little concerned that she's never worked with CI children and she's not an AVT. So, I'm not really sure what she's going to have to offer. I'm hoping for the best.

Older brother, Gregory is transitioning nicely into Public school (Sophomore year). I was pretty stressed over the transition. My kids have all gone to private Catholic Schools, so I was really worried about the change. So, far, Gregory is really liking the new school (and it's in our back yard) and his grades are now A/B - mostly A. So, I think we made the right choice.

That's most of what we're up to. I looked at my September calendar and we have appointments every day except 4 days in September. Several days, we had 2 appt in a day. I don't know why it's been so crazy lately. October isn't looking any better.

September 11th, 2009

Rainbow's United provides early intervention to children ages 0-3. This is critical to developmentally delayed children's success. Kinnick and Carver both receive these services. Our services include SLP (Feeding and Speech), PT (gross motor), OT (fine motor), VT (Vision), AVT (Audiology), and an Early Childhood teacher. I never feel like we get enough services (I'm just that kind of mother). However, I do feel very fortunate that we receive the services that we do receive and they are at no cost to my family. Until the last couple of months, we had the best AVT through Rainbows. She wasn't a certified AVT until just recently, but had the experience -just needed to complete the certification. She is the ONLY AVT certified individual in the area. Rainbows let her go as part of their "Reorganization" effort. I guess they couldn't afford her. This has left us without any kind of Teacher for the Deaf. This is a huge blow for us. Carver needs these services to give him the full benefit of his CI's. There isn't even anyone else in the area that can offer these services. This highly needed individual is now jobless and not accessible to the many people that desperately need the services that she offers. Many of us are pleading with Rainbows to reconsider. I've even begged my ENT to consider hiring her in their office. So, I'm kinda bummed right now. Carver's second CI is scheduled for September 30th, and I don't even know who's going to provide the services that he needs to make the difference.

September 9th, 2009

Kinnick seems to be feeling better. I took her to the Doctor last Friday. They did a urine test and took 4 stool samples. The urine test came back positive for a UTI, again. It also showed glucose in her urine. So, we got yet another antibiotic and an order for blood work to check her blood sugar levels. The first blood test was taken right after breakfast and showed 180. The normal range is 80-120. So, this was a little high, but explainable since she had just eaten pears and 4 oz of formula loaded with sugar. So, we took it again first thing the next morning. This time, the result was 83. So, it's looking like maybe the glucose in her urine was a false positive. I'm not sure why she has started getting UTI's. However, both times have been when she's had really bad diarrhea. The Doctor is going to make us take some add'l tests on her Kidney's and Bladder. I'm a little irritated, because it seems like both UTI's can be explained. But, what do I know? We got out of the tests last time, but I'm pretty sure we won't get out of them this time. All of the stool samples came back normal.

The Doctor is also ordering the Synagis shots again for this year - providing they can get Insurance to approve them. Typically, Insurance only approves the Synagis shots the first 2 years of life. Kinnick and Carver will be 3 in March, so I'm not expecting them to get approved. But, if they can get them approved, we'll take them. The Synagis shots won't prevent the kids from getting RSV, but will make it less severe if they do get RSV. Kinnick's lungs are so crappy from all of the lung infections that getting RSV would be a real setback for her. Carver's lungs have actually done pretty darn good. Amazing since he had the worst lungs in the NICU and they thought he would never come off the oscillator. This sure proves that nobody knows the outcome of these micro-preemies except God himself.

My Hawkeyes made the "Press"

Check out my kids....

They are the first 3 photos ....

Just paste the link below in your browser..

http://www.press- citizen.com/ apps/pbcs. dll/gallery? Avis=D5&Dato= 20090903& Kategori= FRYFEST&Lopenr= 909030801& Ref=PH

Most of you that know us, know that Kinnick, Carver, and their big brother, Hayden are all named after the Iowa Hawkeyes (Dad's the Hawkeye). Hayden Fry (former Iowa Hawkeye football coach) turns 80 this year. They are having a big ceremony in his honor. They asked for photo's of people or animals named after Hayden Fry. Well, we have a few :o). I quickly submitted a picture of each of the kids in their Hawkeye outfits. The pictures aren't current, I only had a short time to submit the pictures, but they made the press!

September 2nd, 2009

We're getting our Disability Determination! I received a call from the Social Security Administration today saying that they are going to process a Disability Determination on both kids - even though we don't qualify financially. Apparently, we're a rare case? The issue went all of the way to Baltimore. Baltimore is where the SSA headquarters is located. My case(s) will be reviewed in Baltimore vs. Topeka. They said they'll have them complete by the end of September. Normally, it takes up to 3 months to complete a Disability Determination. I credit Channel 12 for getting the Determinations. Without them, I would have given up. So, I will add a section to the bottom of my Blog giving all of my contacts in case anyone finds themselves in the same situation. I know the Determinations aren't complete, so I'll try to avoid the happy dance until I actually see the Determinations.

September 1st, 2009

I rescheduled Kinnick's scope and PH probe testing for 9/8/09. She's still not feeling well.

Channel 12 returned my call yesterday and agreed to help me get what I needed to keep my Cobra another 11 months. Kim Wilhelm from Channel 12 was able to get me in contact with the top guy in communications at the Kansas City Social Security Administration office. When she calls on behalf of Channel 12, she is considered "Press" and gets to go straight to the top. She didn't get stuck talking to all of the people that I had to talk to. Since she was able to talk to the top guy, that put me in contact with the top guy. If he can't help me, nobody can. He said that he would spend the afternoon talking to all of the experts and said that he would get back with me ASAP. He said that he would do everything he could to get me what I needed. What a relief! Hopefully I'll be able to get what I need, now. I will be sure to share contacts and phone numbers for anyone else that finds themselves in this same situation.