Tuesday, November 20, 2007

November 20th, 2007

Sorry it has been so long. We have been so busy.

Carver continues to do the same. He is still on a 1/4 lt of oxygen. He now weights 11 lbs 13 oz. We were finally able to get the formula he was on in the NICU - Similac Special Care 24 calorie. He really does well with this formula. He has expensive taste. It only comes in 2 oz ready to feed bottles at $80/case. A case lasts about 3 days - that adds up to $800/month. The Home Medical Service that we get all of our medical supplies from is trying to get approval from Medicaid to get the formula covered under our Medicaid card. We'll cross our fingers. If she is unable to get it approved, we'll have to try something else in another month or so - we can't afford the $800/month with a family of nine.

Carver had his BAER test last Wednesday. Unfortunately, the test results remained the same as the last test results. He is profoundly deaf in both ears. To give you an idea of what he is hearing..... a lawn mower's sound is at about 105 dB. They THINK they may have seen a response at 120 dB.

Normal range or no impairment = 0 dB to 20 dB
Mild loss = 20 dB to 40 dB
Moderate loss = 40 dB to 60 dB
Severe loss = 60 dB to 80 dB
Profound loss = 80 dB or more

Carver's ears were molded for hearing aides. They do not expect the hearing aides to work, however they believe they will keep the ear stimulated enough that when he is old enough to get a cochlea implant, our odds of success will be greater.

We have had so many appointments. There have only been a couple of days on my November calendar where we have not had an appointment. We have been fortunate to have the Speech Therapist, Physical Therapist, Occupational Therapist, and Dietitian come to our home. Carver is really starting to loosen up his muscles. He still has some stiffness in his legs, but we are seeing a big difference.

Carver will have his eyes looked at under anesthesia next Tuesday. The doctor still thinks the left retina is detached. He will take pictures and send them to Dr. Trese in Detroit. However, he feels like the right eye is doing really good. If we were only able to save one eye, the surgeries will still be considered a success. If we hadn't gone to Detroit, he would have been blind in both eyes.

Kinnick came home November 12th. She really had a rough time with her psudomonus in the PICU. After being home one week, her psudomonus returned. She is now taking an oral antibiotic to avoid going back to the PICU.

We're still adjusting to Kinnick being home. She has so many more needs then Carver. She is on a higher level of oxygen (usually at least 3/4 lt), needs suctioned all of the time, has 8 breathing treatments a day, has more meds, and has a G-tube for feedings. The G-tube makes me really nervous. In fact, the Home Health care nurse accidentally pulled it out the other day - that was scary! We had started to bottle feed Kinnick (small amounts as tolerated) prior to the return of her psudomonus. The good news is that she was really doing pretty good. We're hopeful that she will catch on quickly and we can get rid of the G-tube.

Kinnick missed her BAER due to being sick. We'll have to reschedule for December or January. She will have her eyes looked at under anesthesia next Tuesday. The doctor believes that her left retina is still detached, but believes the right retina remains attached and looks good. The doctor will take pictures and send them to Dr. Trese in Detroit. We'll wait to see what Dr. Trese recommends. We may be going back to Detroit for more eye surgery.

I haven't had a chance to read all of my preemie friend's blogs. I did browse them quickly and am excited to see them doing so well. I'm so happy for Jodi and Stacy (and families).

I hear my little ones crying, so better go. I'll write more when I can. Please continue to keep Kinnick and Carver in your prayers.



Stacy said...

We have been so worried about you guys since we haven't heard anything in a while. We check on your blog every day! We continue to pray for you every day. We miss you guys. If you have to come back here, I hope you will give us a call.
Love, Stacy, David and Conner Larson

Anonymous said...

You are in my thoughts and prayers every day. I've still been checking your blog and thought about emailing you to find out how you are doing, but I know that you are busy. Please know that we think of you guys every day.
Love, Jodi, Ryan and Olivia Glunt

yanihawaii said...

Aloha Shanon, this is YANI from HI. Regarding milk, my baby still needs 22 cal formula at least 3 times a day. I got that from WIC program for free. Can you also get it from WIC?

Luv & we keep on praying for the twins.

~ Yani Shaffer ~
Big Island, Hawaii.