6 month check up

Yesterday we had a doctor's appointment for Leah's 6-month shots, and also so we could get her pre-op physical done. Because of a super-nice nurse practitioner there, we are now treated excellently. Because of our infection worries, the nurse arranged it so that we never have to wait in the waiting room. I call the office as we're pulling into the parking lot and they confirm that they have a room ready, and we just go on in and back. Even getting the appointment was all the nurses doing. She gave me her personal cell number and so when I had trouble getting an appointment through the receptionist I just called Nurse MacLeod and explained everything. Within a day, magically the 'totally booked' office had a 10AM Friday appointment for us.

Leah got 4 shots and an oral medication as well. She cried for the shots but always bounces back to happy-Leah really quickly.

The shots really pooped the poor widdle girl out though.

(This was from later in the evening)

When we got back home around 11:30 I managed to get 2 oz of formula in her before she passed out. A little bit after 2 we got her up for a nice warm bath, a trach collar change and bandages change. After that, around 3 she gulped down 5 oz. After that it was lights-out for a lot of the day - between then and when Jeff got home from work at 10, she had only managed to take in 3 oz during random awake moments.

She had done really well on her feedings from the previous day (27 1/2 oz!!) so I wasn't too worried about it. If she needed her sleep I was happy to let her sleep. Overall with nighttime feedings from the nurse we got 19 1/2 oz in her for the day. Not surprisingly she's doing better today, and even had a good 45 minute fun session on her activity mat. Now she's napping and I'm sure she'll wake up good and ready for another full bottle.

Since I still have her pre-op physical sheet I know exactly what her measurements are (usually I'm so busy watching the nurses to make sure they don't hurt Leah that I fail to really pay attention to the numbers as they say them after each measurement).

Height: 23 1/2"

Weight: 12 lbs 5 oz (She's gained almost 2 pounds in one month).

"I'm hiding behind my butterfly"

We're still currently bandaging each limb. I could theoretically get away with only doing just 1 leg and 1 arm, but I want to make sure everything is totally healed until I leave anything unwrapped. Overall her skin looks really good, and she heals remarkably fast. But once the skin has been broken down it's easier for it to blister again soon after. So while nothing on an arm or leg may be an open wound, if it's the slightest bit red in the process of healing, it'll blister as soon as something (blanket, humidifier tubing, toy) rubs against it.

So there's the latest update on the best baby in the world.

"Awww - gee shucks Mom"

Thrush Busters

Yesterday was Jeff's birthday, but please don't remind him of that. He was in a funk the whole day. Most likely it was a combination of having just come back home from his 2 1/2 day camping trip with his friends, him being tired from the camping trip, and just the thought that he's getting older. If turning 29 depressed him I'd hate to think what next years 3-0 is going to do to him.

While Jeff was away, my Daddy came to stay with Leah and I and kept us company. We all had a fun time watching the Little League World Series and just chilling out. I was rooting for the Staten Island, NY team - they lost last night to San Antonio. : (

And last weekend my Mom and sister came down to visit Leah as well. Leah loves to have visitors!
Here's an awesome picture my Mom took during her visit.

(Please note Leah's 'thumbs up' pose):




In other news, we seem to have won our battle with thrush. It was most likely a reaction to the antibiotics she was on in the hospital. Leahs' dermatologist gave us a prescription for oral Nystatin medicine but it made Leah throw up so I turned to home remedies. (The medicine was 48% sucrose - anything you read online about thrush says to avoid sugar. Plus, it was cherry/mint flavor and both Jeff and I used to throw up from mint when we were kids).
So instead of the prescription we used yogurt, extra virgin unrefined coconut oil & baking soda and water. I'm also boiling her binkies and nipples a ton, and keeping a container of baking soda and water next to her so I can rinse her binkies a lot. But we went from funky tongue to a completely non-funky tongue overnight - so whatever we did worked!

Today I worked on re-applying for SSI for Leah. (It only takes about 14 and half hours to complete all the online forms about every single doctors appointment she's ever had). I applied back in April while living in PA but we were turned down because I was making too much money at the Red Cross. But now I know we would definitely qualify, so it would be moreso a matter of determining whether or not she is indeed disabled. I know it would help out a lot with our finances.

Speaking of which, I'm looking to make some coin from selling these vintage remote control model planes we found in our attic. I had my Dad pull them down and look them over. Then I went online and did some research. Apparently each of these things could be worth a couple hundred bucks, easy. I had to join some RC plane enthusiasts forum just to get some info - so now I'm really a nerd. But I got some good tips. Essentially I'll have to go through eBay to try to sell them but first I need to make sure all the parts are there and in good condition. So aside from all my other duties, chores and to-dos, I get to rummage through 40 year old model plane boxes and try to figure out what I'm looking at.

Time to go - Leah's playing on her activity mat and making some interesting gaseous type noises so I believe 'doody' calls.

Doctors Appointments and All About Poop

This past week was pretty great. It was a lot of Mommy & Baby time as Daddy is trying to get back into a routine of work.

On Wednesday we had 2 separate doctor's appointments at the hospital. First was Dr. Epps, Leahs new dermatologist. She had some blood drawn as part of her biopsy testing. (Dr. Epps was kind enough to schedule the best vein-finder IV tech in the hospital to draw her blood. He used my special super-soft gauze under the tourniquet and while he had to hold her little arm pretty firmly, we didn't really have any blistering, only a bruise). Dr. Epps also made special arrangements for us to come in early, before the office technically opened so that we could go straight back to an exam room and not sit in the waiting room with other kids.

There is the possibility of Jeff and I being tested as well to learn exactly what happened, genetically speaking. Our genealogy is determining some of what tests are being done since there seems to be some correlation between types of JEB and ethnic backgrounds. So with Jeff having a Scandinavian background, and me having a German one; Dr. Epps choose the testing based on that.

Then we were off to the ENT. That appointment wasn't so well-prepared. We sat in an exam room for a good 35 minutes before the doctor came in. Then we had to wait while the scheduling coordinator worked on finding us a date for Leah to go back to have another look at her airway. Overall we walked into the ENT office at 2 and didn't leave the hospital until almost 4. That's right, the beginning of DC rush hour traffic.

I'm a smidgen worried about this second look at her airway. Essentially it's like another surgery. She'll need a pre-op checkup (another trip to the hospital), she'll be sedated for the procedure, and we'll most likely need to spend the night at the hospital for observation. But; if it means finding out anything more about if and when the trach could come out, we'll have to do it.

For now I'm just very, very happy that Leah is home, eating well and above all: happy. I'm amazed at how well she does with everything. She pretty much only cries when she poops herself, which is a great thing when you think about it because with our worries about infection being so great, I definitely want to know as soon as the poop hits the diaper; and she lets me know. I always call her the best baby in the world. When everything going on makes me want to act like a baby and kick and scream and cry, she just looks at me kind of like this:

I don't know exactly what this face is .... but I know it's happy and goofy. Basically, typical Leah (the best baby in the world).

Some Photos From Leahs Baptism

Mommy, Daddy and Baby Leah

Getting Leah into her gown!! We didn't know if it would work. It's 3 layers when she's used to wearing nothing more than a diaper and blanket -oh and it was about 100 degrees that day. Leah wore the gown that I was Christened in 27 years ago.

Mommy and Baby! Leah looked so beautiful!

Introduction & Update

For those who don't know; here is Leah's story:

On February 10th of 2009, Leah Elizabeth Turnquist was born. Upon birth it was noticed by the doctors and nurses that she had some unusual blisters on her skin, fingers and toes. She spent 6 days in the NICU where her blistering got worse & where the medical staff didn't know what was going on. By the time she was released we had learned (mostly through our own research) that Leah has a skin condition called Epidermolysis Bullosa. It is very rare and incurable.

We took Leah to see a dermatologist who is an EB specialist. Based merely on sight & without a biopsy, the doctor said Leah had a mild case of the least severe form of EB: EB Simplex. For almost 6 months we watched Leah's skin improve, while her breathing got worse. Week after week passed with Leah being congested. I dusted and vacuumed like crazy to avoid dust around her. We rehomed our dog & I had to let our cat be taken to Cat Camp (i.e. my sister's house) to see if maybe it was all allergies. Every doctor Leah saw told us there wasn't anything to be done other than placing her next to a humidifier while she slept, use saline in her nose, and elevate her head. On July 9th, Leah's congestion turned to wheezing and we made a trip to the ER. The ER visit turned into an overnight stay in the PICU where her breathing did improve. But, around 6 PM on July 10th Leah went into severe respiratory distress. Jeff and I had to leave the room with the social worker.

Several different doctors tried to get a breathing tube down her throat but couldn't do it. An emergency tracheostomy was performed while Jeff and I cried, prayed and had no idea what was going on.

While in the hospital healing from the trach, the dermatologist performed a biopsy. The results that came back were not what we wanted, but were somehow what we expected: Leah has Junctional EB. Junctional EB involves both the external (skin) and internal (airway, for example).

Junctional EB does not have a very good prognosis. Most babies with JEB do not make it to their 2nd birthday; most often because of airway issues, infection and malnutrition.

We are hoping, of course, that Leah beats those odds but at the same time we must look at things from a realistic perspective in order to prepare for what may happen.

For now, Leah is home from the hospital (YEA!!!), eating well from a bottle (24 oz yesterday!!), has no feeding tube, and is alert, happy and well, just being Leah.



Last Sunday, we had Leah baptised here at home with some of our family and friends.




So there you have it: a mini introduction and general update on where we are now.