Thursday, December 29, 2005

Scope results...

Yesterday Shelby had her upper endoscopy ("scope") at Rockford Memorial Hospital. She was wonderful! After talking things over with the anesthesiologist, we decided to not tempt the Versed (pre-med that really, really relaxes her that she had trouble waking up from when she had her tooth pulled) for such a short procedure and that I would go in with her while she fell asleep. She was scared, but did awesome. What a brave little girl she is! I helped hold her arms and legs still while the "gas" took effect. Its amazing how much you can change as a parent in 3 1/2 years of medical mayhem. I used to leave the procedure room or OR crying, haunted by the image of her struggling and fighting being put to sleep. Now I understand it as something totally normal that people do as they go under. Once she was asleep, I kissed her on the cheek, reminded Dr. Deutsch to have a nice, steady hand, and was on my way. Even though I can do that without much emotional outburst, I still don't like to be away from her long, so I scooted off to the cafeteria for a pop and bag of chips while Scott went to make some work phone calls and get a big 'ole cuppa Joe. Once back waiting for her I couldn't just sit, either. I have to pace. And look at the fish. Very relaxing. Fifteen minutes after they took her in Dr. Deutsch came out to give us the results.

Previously she had 1 small varix that stayed the same for about a 2 1/2 years. Now she has 4 varices, a red stomach, and a hemorrhoid. Varices are graded on a scale of 1 - 4 with 4 being the worst. Thank God Shelby has only one at a grade 2, one graded at a 1, and the other two aren't even big enough to get graded, but are there none-the-less. Her stomach is red due to the increased blood flow around it because the blood can't flow through her liver like it should. The hemorrhoid is, well, really, a varice. Hemorroids are veins that are taking on too much blood flow just like a varice. But is it just a hemorrhoid or something caused by her liver disease? Who knows! Its something to keep an eye on, too.

She woke up from the anesthesia crabby and u
pset because her I.V. was still in. It didn't take long for Shelby to get her way. She was thrashing around so much thus the I.V. started bleeding and she got it out. Trust me, I think she knew what she was doing. Smart little girl. Once that was out, she settled down, and was on to drinking and eating. We were able to leave the hospital 1 hour and 15 minutes after her procedure with her walking on her own. She didn't look like someone who just had general anesthesia. Off to McDonalds we went as promised.

I think the hardest part for her was not eating or drinking from the time she woke up until after the test. I used the promise of my special dark chocolate as an incentive to put on the medical bracelets at the hospital and, sure, enough, the little bugger remembered it as soon as she started to come to. She also remembered that she wanted pop and got a little irritated when the nurse mentioned a popsicle, but didn't return with one. Trust me, the nurse figured out why she was mad real quick! The popsicle arrived moments later.

While waiting to go in for her test, Shelby had great fun running through the halls while I counted to see how fast she could go. Mind you, this is a
3 1/2 year old in nothing but hospital slipper-socks, a pull-up, and a pj shirt. Very cute! Scott and I are pretty lax on what we let her get away with to entertain herself when doctors are involved. Race around the halls, great! Just don't run anybody over. Draw all over yourself with a pen, sure! Have fun! You know, stickers and the usual hospital tricks don't always work that well for "frequent flyers." RMH did update its pediatric outpatient area since we were last there and had an awesome fish tank and play area. Shelby did enjoy that a bit.

So many of you are probably asking "Now knowing
about these varices, does it change anything for Shelby?" O.k. if you weren't asking it, we were. No, nothing changes. Now finding out her labs results today (which I'm trying to be patient about) could change things if they're still rotten like the ones on the 13th. Knowing about the varices just makes us worry more. Having a GI bleed is Shelby's biggest risk right now. A GI bleed would mean her vomiting blood or it coming out the other end. This would mean calling the ambulance and, most likely, spending some time in the hospital. She could need a blood transfusion or several. Sometimes bleeds aren't bad, but they are referred to as "life-threatening." Not good. Now will Shelby ever have a bleed? She might not. She could have horrible, grade 4 varices that would never bleed or she could bleed alot. There's nothing we can do with her that would change that fact. The doctor's at Children's Memorial take the route if it ain't broke, don't fix it - meaning, they don't try to treat the varices unless they're bleeding because the risk of doing it preventively can be worse that just waiting and seeing what happens.

Scott and I were actually expecting to hear this news with her last scope in November of 2004. We're not surprised that she has 4 varices because we know that her little body can only take so much of a crappy liver before it takes a toll on her. Those of you that know Shelby in person know that you can't tell from the outside (except for her large abdomen) that there is anything wrong with her, but her insides tell a much different story.

Continue to pray for her please and all the other children in the world that suffer due to disease, hunger, abuse, etc.

I''ll leave you with a funny conversation we had at t
he hospital.
Me: Shelby, these are the pictures Dr. Deutsch too
k of your insides. What do you think?
Shelby: (Thoughtful pause) Ick!

Gotta love her! I'll update again when I hear o
n her lab results. Here's some pics of the girls from Christmas. (Click on any of the images to see larger.)

Friday, December 23, 2005

Merry Christmas!

Just wanted to take a quick moment and wish everyone a very Blessed & Merry Christmas! Scott is doing great recovering from his shoulder surgery. He's o.k. spacing out his pain meds to about every 6 hours or so until he moves the wrong way. January 3rd he begins physical therapy.

Riley is doing great, too. Thursday winter break began and she is having fun playing some new vtech smile games. We let them "open" one of their Christmas presents today - goldfish! One is orange and the other is white. Their names are Annie and Sandy. I would show you a picture, but our camera died this morning. Actually, its a known problem with the camera we have and they'll fix it for free. I just have to be without a camera for 2-3 weeks. Just in time for Christmas...

Shelby is doing o.k., too. She seems to be getting over her cold slowly, but surely. This coming Wednesday at RMH she'll be having an upper endoscopy (scope) to check for varices in her esophagus. Please say prayers for her. She was so excited when we left clinic on the 13th, exclamining "no more shots, no more x-rays, no more needles for a llllooonnnnggg time!" We'll, baby, I hate to tell you, but there will be needles this week. Its a fairly quick procedure, but the results could be the beginning of the long road to transplant OR she could continue her smooth sailing. Her repeat labs will be drawn while she's under the anesthesia, so at least she won't feel the needle. She'll probably wonder why the band-aid is there, though.

Please also continue to pray for our little friend Annika and her family.

Thursday, December 15, 2005

Scott's surgery pics

I'm not going to gross anyone out with gory pics so don't worry. In fact we don't really even know what's under the gauze other than 4 little incisions. Scott's surgery went well. He was in for about 2 hours and the doctor fixed a little bit of everything. He is doing well right now with his polar care ice pad, 2 Norco pills, and a pain pump. What is polar care you ask? See the blue stuff and the cooler? Ice is in the cooler and is then pumped through the tubing to the blue pad wrapped around his shoulder. It keeps that shoulder nice and cold. The black stuff is the sling that his arm will have to stay in for quite some time. He is tired and sore right now, but hopefully we'll be able to keep on top of his meds to keep the pain under control. Here's crossing our fingers for a restful night!

Please, please continue prayers for Annika. She went back into the OR today. Please read her mom, Moreena's, updates for more details.

Shelby's clinic results

Well, Shelby had clinic on Tuesday in Chicago. As I stated before, its the first time she's been to liver clinic there in 6 months. They were pretty amazed at how well she is still growing, how strong she is, and how active she is. Her liver and spleen continue to grow (that's not good), but we were told that 80% of her liver can be non-functioning and she can still compensate like she is. With so many spider veins on her face, they do agree with us that another upper endoscopy (scope) is in order to check for varices. I'll be scheduling that locally with Dr. Deutsch hopefully for January.

I did hear back yesterday, though, from the nurse that her "liver" numbers do not look as good as they have. Her bilirubin is up (the stuff that makes her look yellow) and her platelets are low at 75,000. Normal for a child her age is 150,000 - 400,000. Since she has a large spleen that "gobbles up" platelets, she is allowed by her transplant team to be o.k. as long as her platelets are above 55,000. She was at 134,000 in September. See the concern? Anyway, we are to watch her as she has a cold already and things like that can throw off a liver kid's numbers. If she doesn't improve or the cold goes away, but she isn't acting normal then we are to have her labs retested. Otherwise, they want her lab work redone in the first few weeks of January.

There is concern, too, to watch her for hepatopulmonary syndrome with her portal hypertension. I can't find a good link to a definition of hepatopulmonary syndrome that isn't full of medical mumbo-jumbo so here's my definition. When blood can't flow through a diseased liver like Shelby's, it can also effect the rest of her system. Hepatopulmonary syndrome would be when her lungs are affected because of the "block-up" in her system. If she had this, she would be re-listed for transplant as "curing" the diseased liver is the only way to get rid of the hepatopulmonary syndrome. She was tested back in March for pulmonary hypertension (sort-of similar to hepatopulmonary syndrome) with a saline bubble echo. That test came out o.k., but they still want to watch her closely for pulmonary problems because they can have no obvious symptoms.

Basically, once you start getting secondary diseases/syndromes that can't be managed with medication (like her osteoporosis) or medical procedures you need to take care of the primary problem, the diseased liver. Her team is watching closely for those types of issues with Shelby because she is not following the "textbook" path of progression of biliary atresia. Her Hepatologist said that she's never had a patient like Shelby. That's great as for the past 3 1/2 years she has exceeded all their expections, but it also makes it hard to know what's on the horizon for the progression of her disease. Right now, her biggest risk is a GI bleed from possible varices.

Today Scott is having shoulder surgery at noon at St. Anthony's. Please hold him in your prayers as he is having a bone spur removed, 2 cysts removed, and a possible tear fixed. It is to be outpatient, but he will be in surgery for 2-3 hours. On his FMLA paperwork his doctor listed him as totally incapacitated for 6 weeks! Yikes! He is nervous about the pain that will come with recovery, so please pray for him to be at peace with that.

Thank you once again for checking on our family and holding us in your thoughts and prayers.

Friday, December 09, 2005

Just normal life around here

A big THANK YOU to everyone who helped support Shelby's fundraising by coming to the 3rd Annual Cosmic bowl event last Saturday night. We had a smaller turnout than the past years, but all who showed up had fun and won lots of great prizes. THANK YOU, THANK YOU, THANK YOU!!! About $2000.00 will be added to Shelby's COTA fund from that event.

Things have been very normal around here and we like it that way. Shelby is due to go to liver clinic in Chicago this Tuesday. She hasn't been there for 6 months!!!!!!! Amazing! That's the longest she's ever gone between clinics. We are very happy and grateful for her good health. Here's a recent picture of our cutie-pie. As you can see, she has quite a few spider veins on her face due to her liver disease. We will be asking about those and that might lead to a scope early next year, but hopefully that can be done here in Rockford.

Here is Miss Riley singing at her winter program last night. She did wonderful and looked so cute (and big) on stage. She's on the top row on the end (with the white barrettes in her hair). We are so proud of her, and...

she lost her 1st tooth Monday moring!!! She was so excited! This is her on the phone telling Grammie.

Here our our beauties Thanksgiving morning posing very nicely for us. But...
you know that doesn't happen very much!

Please, please hold our little friend Annika in your prayers. She had surgery on November 30th and is having a really, really rough time. This family needs your prayers. Please leave me a comment so I know you visited.

Wednesday, November 16, 2005

Happy 6th Birthday Riley!!!

Tuesday was Riley's 6th birthday. She got to have a family party Friday night and a friends party Monday night at Chuck E. Cheese. Here are some pics of the parties and my beautiful girls. Enjoy!

Check out her hair-do. She did it herself for the family party.

And here is the full-length pose. Check out the slippers...

Riley and cousin Ray.

Riley's cake was decorated by her, Shelby, and Ray. Can you see all those pink sprinkles?

Here she is at Chuck E. Cheese's. Isn't she beautiful? She is growing up way too quickly! Turns out she likes the games at Chuck E. Cheese's, but not Chuck E. himself. Daddy had to ask Chuck E. to leave so Riley would go near her cake. Oh well! Live and learn. No more Chuck E. Cheese parties for her.

Look how long their hair is getting. Mommy, Riley, and Shelby wore french twists in their hair on Sunday.

And last, but not least, check out this pose. What hams! Their not my babies anymore...

Wednesday, November 09, 2005

Fun weekend

We had lots of fun this past weekend when our friends came up from Normal for a visit. Annika just turned 5 and Frankie just turned 2. Their mom, Moreena, just turned...just joking Moreena! Anyway, tons of fun was had by all and the Moms and Dad (Scott) were exhausted after our 24 hours together were up. The girls played dress-up, got out every toy in the toyroom, stayed up waaaayyy too late, played at the YMCA, played in the leaves, and then got out every toy in the toyroom again. They were very, very, very busy little people!
Here is Miss Riley in her get up Friday night. Nothing like putting everything on at once! And here is Annika the Princess...
Annika wore this outfit most of Friday night and I kept thinking it was Riley. Riley would wear this pink dress alllll the time (when it used to fit) and with the similar hair color, they just look so much alike. See for yourself...
O.k., so this picture doesn't show it quite well, but Shelby, Riley, Annika, and Frankie do all look alike. A few summers ago, Moreena and I were brave (crazy?) enough to pack up the girls in our van and head to a liver disease family picnic in Green Bay. This trip included an amusement park and an overnight stay. We survived and had fun. I (Moreena was in the bathroom) was sitting with all 4 girls in a McDonald's during a snack/potty break and a man commented on how pretty all my girls were. I just thanked him rather than correcting him that I was mother to only 2 of the girls, but Moreena and I did talk later that, with how the girls' birthdates are, one mother could have given birth to all four girls! Imagine that!!! How exhausting!!!Here is 2-year-old Fabulous Frankie! She had a great time in the leaves. What a doll! She is so cuddly and, believe it or not, the last little girl to fall asleep Friday night.
See that little bit of blue in the leaf pile? Yup, that's Scott! He showed the girls how he falls into the leaves and then they attacked him. Many, many giggles were involved. Here's the video. (Thanks Moreena!) Much, much fun was had by all and we look forward to getting together with them very soon.

Thursday, November 03, 2005

Happy (belated) Halloween!

Happy Halloween (a little late)! Riley & Shelby had tons of fun (as usual) and we have enough candy to feed a small country for a decade. Yikes! Here are some great pictures of the jack o'lantern carving with Scott's family Sunday night. It was Bruce's (Scott's brother) 40th birthday and his parents were leaving for about 2 months to travel in their motor home all around the country.

This picture was taken at the Pumpkin Patch in Calendonia. The CDO classes went on their annual trip there. I let Riley play hookey from Kindergarten and go with us.

And they are in their costumes. Ariel, the Little Mermaid, and Grumpy Care Bear (very fitting for Miss Shelby's personality). Thank goodness it was warm enough that too many layers weren't needed and the costumes didn't have to be covered by coats.

Please go back to Shelby's caringbridge page in the next few days and read up on the upcoming 3rd annual Cosmic Bowl fundraiser @ the CherryBowl coming up December 3rd. Thanks and take care!
(P.S. Please forgive my formatting on this post - I'm still learning how to use this new webpage.)

Sunday, October 16, 2005

Talking without thinking

That would be me, talking without thinking. Today in church I asked for prayers for Todd's family, Haley's family, and for Annika's upcoming surgery. Riley was sitting with her little choir as they were singing today and it didn't even hit me that we had told her about Todd's death, but not Haley's. Yup, you guessed it. After church she hit me up with "Was the Haley that died the one who sang the liver songs?" And I said "yes." She cried a while, had some questions, and sang Haley's songs this afternoon and does seem to be grasping it a bit (she's already reminded Shelby to think of the circle of life in the Lion King movie and knows that Haley's spirit will always be in her heart). Its Shelby that I'm worried about. She just kept saying today "I miss Haley because she died. She won't be able to write any more songs." Then she would cry. Finally Scott laid down with her tonight to help her sleep.

Please pray for my girls that they can grieve and come to accept the natural cycle of life as it is.

Friday, October 07, 2005

Sad times here and fracture #7

Last Friday, September 30th, at 5:55 a.m. we received the call letting us know that one of Scott's best friends, Todd, was killed in a horrific car accident. He leaves behind 2 boys, ages 8 & 4, and many, many close friends as well as his mother, father, and sister. Then on Sunday I learned of the death of little 11-year-old Haley, one of our "liver" friends. We are so saddened here and are trying to cope with these losses of vibrant, young life.

On the day of Todd and Haley's funerals (Wednesday) my Mom watched Shelby for us. Shelby fell a couple weeks ago off the table at the doctor's office (see "What a day" post) and hurt her shoulder. Now, 2 sets of x-rays later, a large bump has formed at the inner end of her left clavicle just under her neck. Mom took Shelby to the orthopedic doctor (her one here in Rockford, not Chicago - she has 2, you know) and he feels its a fracture that is just not showing up on the x-rays. Why? Who knows. It is still quite sore for her, but she does use the arm fully until she bumps it. Picking her up still causes her pain and so does touching the bump. Its about the size of a large gumball, bigger than a marble, but smaller than an egg. If the bump gets bigger or the area gets red, then the next step would be a CAT scan with radioactive dye. Please pray that it just continues to heal and the pain lessens for her. She has already broken each collarbone (fractures #3 and #5), but has never had a lump like this.

Please, please also pray for Todd and Haley's families and all those whose lives they have touched.

Thursday, September 29, 2005 a "sick" way

Things have become "normal" around here again. Shelby woke up the day after getting her tooth pulled like nothing ever happened. When you ask her how her tooth came out she shrugs her shoulders, reaches in her mouth and grabs a tooth, and says "maybe I just wiggled and wiggled it and it came out?" She's not quite sure what happened and that's exactly why we wanted to give her the Versed. She doesn't remember any of that day and that's just fine by us. The tooth fairy brought her a whole dollar in exchange for her little infected tooth and she was as happy as can be. Friday we had a follow-up with Dr. Albers. Shelby made him a card, "signed" her name, and made him open it while she was still there. She kissed him on the leg, too. He's a great doctor and we told him how much we appreciate him going the extra mile with her care. He even called Wednesday night from his home to check on her. How great is that?! Shelby is now, per her transplant nurse, only to get .05 mg per kilo of Versed instead of the recommended .75 mg per kilo. We will definitely use Versed again, but just with much more caution.

Saturday I woke with a horribly sick feeling stomach and a sore throat from hell. I went to my job at the Y, but left after 30 minutes. I went home, fell asleep, tried to eat, slept again and then told Scott and I had to go to the doctor. Off to Physicians Immediate Care we went for me to be diagnosed with strep throat. Yuck! Then we had the fun task of finding an open pharmacy at 6:45 on a saturday night (I didn't know it was that hard). We went to McDonald's for supper as the girls were starving and getting cranky and I thought a chocolate shake was the perfect thing for my burning throat. WRONG. I couldn't even swallow that. I had ice water. now I'm cranky and tired and hungry. I bought some Chloraseptic spray and that helped a bit, but I didn't start to feel better until Tuesday. My throat still hurts now, but is much, much better. Strep sucks!

Then...Riley threw up right when she got to school yesterday. She is running a low grade fever also and is home today from school. I think I've kept the girls separated enough that hopefully Shelby won't catch it, but we'll see. Scott and I did take advantage of his parents willingness to babysit a puking child and her wild sister and saw Judas Priest in concert last night. I think every Mommy who's had a rough day with a sick kid while she's still recovering from strep throat should get to go out, hang with the boys, drink beer, and head bang, don't you?

Tuesday, September 20, 2005

Routine? By the book? I don't think so!

Here she is this morning while dropping her big sister off at the bus stop. See her front top tooth that's about half there? That's the one that was pulled today.

Now, this is what she looks like. Still cute as ever! Let me tell you, though, what happened over the course of the day between those two usual with a Shelby story...where to begin...

Well, we showed up at Dr. Albers (oral surgeon) on time (I know, pretty amazing for us!). They called us in, Shelby took the Versed by force, meaning Mommy & Daddy holding her to get it down, and then we waited. It only took about 10 minutes for our drunken 3 1/2-year-old to appear. Everything was hilarious and she kept saying she was going to sleep in the dentist's chair "all day!" She let us help wrap her up in the soft blue blanket they use as a "papoose" and we tucked her Minnie Mouse stuffed animal in with her. Dr. Albers came in, we left, and about 3 minutes later they called us back in. She was not a happy camper, but still very much under the influence of Versed so we knew she wouldn't remember it. She was aware that her tooth was missing, but as of tonight has no clue how it got out (yea, Versed!) We went to a recovery room for about 1/2 an hour then left. She was hungry and asking for McDonald's french fries so that's where we headed. She was still very, very, very, very drowsy, but insisted on those fries and going in the restaurant, rather than just hitting the drive-through. When we first got there she sat on my lap, then wanted Daddy, then got mad that Daddy was holding her so we put her in a highchair. All the while her head was bobbing up and down, several times almost hitting the edge of the table. She could pick up her fries (barely), and could hardly hit her ketchup. She asked several times where her other ketchup was as she was seeing double. She also kept asking "Where did Riley go?" We'd remind her that Riley went to school today and she wasn't here with us, but that would just prompt Shelby to look under the table forever, pop her head back up, and declare that Riley wasn't hiding under there. She did drink a bit of Sprite and eat, maybe, 10 french fries, but not very gracefully at all. Let's just say, people were looking at us.

We finally decide to leave McDonald's as either she had lost interest in the fries, or she just couldn't coordinate her movements enough to pick up anything. She kept going "I forgot what I was going to say" and things like that. We thought maybe we saw a slight improvement in her, though, so we decided to head to JCPenney's to order our roman shades for our livingroom windows. She fell asleep on the car ride which we thought was great and appropriate for what she had been through already. We placed our order and Scott saw a few clients and we headed back to the car with the still sleeping Shelby. Now this is our child that sometimes we can move from carseat to house and the like, but we had already taken out of her carseat, put her in a stroller, taken her out of the stroller, and then put her back in her carseat. We decided then that this wasn't our "typical" Shelby behavior for just having some Versed. Usually she snaps out of it much, much quicker. Now concerned we call the oral surgeon. The receptionist says she'll take the message to him and call us right back. I call my Mom to have her meet Riley at the bus stop, and we head back home on the way to go past the oral surgeon's office, just in case. My mom suggested we try our best to rouse her and that's when the trouble began.

We yelled, clapped, whistled, wiggled, poked, tickled, etc. to try to wake her with no luck. Now throughly freaked, we called Dr. Albers back who immediately called Dr. Peterson (Shelby's pediatrician) who called us ASAP. They asked us to check her respirations, which looked o.k., and then to pinch her. When I said there was no response to pinching her, they said to take her to the E.R.

We arrived at the E.R. about 5 minutes later, I rushed her in, explained what was happening, and they took us right back to a room. Just as I laid her on the gurney, she began to awake. Phew! She was still really out of it, talking incoherently, and wobbling all over, still. Dr. Albers was concerned and compassionate enough to come see her in the E.R. and spend some time with us. We came home about 1 1/2 hours later with a child whose speech was slurred and couldn't walk, but had perked up ALOT. It was determined that, because of her nasty, diseased liver, her body didn't process out the Versed at the rate it should have. She's never had any trouble before with Versed so we were very surprised.

We're home, pooped, and still concerned that Shelby has a good night and no more problems. Please, please say a prayer for her tonight. Its very, very, very scarey to not be able to wake up your child.

For Auntie Lu

Here is Miss Riley showing off her new belt. She said "Mom, can you send this picture to Auntie Lu?" So the Mommy thought how about we just dedicate a whole entry to Auntie Lu? All these pics are for you Auntie Lu! LOVE YOU!

Miss Riley in her new school outfit Grammie bought her. Check out the cool butterfly on her top - notice the butterfly theme? Someone's Mommy would't love butterflies, now would she? She was upset that her "knee-high" socks didn't cover her knees like they did last year. Amazing they can grow that much in one year!

Now check out these tongue shots! We can get Riley to smile for pictures now, but Shelby's smile seems to come only with a tongue hanging out. Do they ever cooperate at the same time?!?!?

Auntie Lu, hope you enjoyed these! This was a great distraction for me this morning as I'm worried about Shelby's tooth extraction today. We have to be there at 10:45. They' re going to give her a nice gulp of Versed (like Valium for little people). Once that kicks in - and we'll know most likely because all of a sudden she'll declare "GROUP HUG" and we'll know she's looped - then they'll strap her down to the papoose board, give her some shots of Novacaine, and then pull her tooth. The oral sugeon said he'll have the tooth out in 30 seconds and I hope and pray he's right as I don't want her laying there when the Versed wears off as it has an amnesia effect. That's the only reason we're okaying her being strapped down because she won't remember it. She's had the "GROUP HUG" medicine before and we were very happy with the results then, so I hope the same for today.

Anyway, Shelby thinks I am a mean Mommy this morning, too, for not letting her eat, but she has to be NPO (without food or drink) for 6 hours before the procedure. We tried to be nice and let her stay up late and eat out her heart's content last night (cookies at 10 p.m.?, go for it!), but she's still begging for food this morning. Right now I have her distracted with a Dora video and the promise of playing on the computer when I'm done. So, I suppose I should wrap this up. More updates later...

Sunday, September 18, 2005

What a day...

Yikes! Thursday we had one of those days that makes you just want to pull your hair out! First of all, Wednesday afternoon I noticed something on Shelby's upper gum. For those of you that don't know, Shelby broke her right front tooth 2 years ago. We were at the YMCA for a swim and next thing we know she smiles at us and half her tooth was gone! She was still nursing at the time so I immediately got out of the pool and headed to the dentist's with her. He filed her tooth nice and smooth, and Shelby went home and collapsed in exhaustion from the whole ordeal. You see, she wasn't too thrilled (who would be?!?!) at Mommy laying in the chair with her and holding her down. Mommy wasn't too thrilled about it either, but it had to be done. Anyway, this tooth has given Shelby trouble for quite a while now. She has gotten it filed down a few more times (I told you she's a busy girl!) and has decay in it. Earlier in the summer she had a dentist's appointment and she actually let him drill it out. I know, we were all amazed. BUT...then she totally freaked when he tried to fill it. So...she's been walking around with more-or-less and open hole in this tooth, just hanging out the welcome sign for more bacteria to come on in. O.k., back to the thing on Shelby's gum. So it looks like a blister, the gum is really red, and its right above this broken tooth. I think "o.k. that's strange," and turn to my husband, Dr. Martin, later that evening for advice. He says "Jenn, that's an abcsess." Oh. Yuck. So, I leave the bedtime routine up to him and scour the internet for information about tooth abcesses. The best I come up with is that when you have a person with complicated health issues, like little Miss Shelby, you don't mess around with these sort of things. Great. I slept good that night!

That brings us back to the pull-out-your-hair day. Hang in there with me here, I know I'm jumping around. We've been trying to switch Shelby to a pediatric dentist as we hear they have more tricks in their bag (o.k. really its 2 extra years of training) to help kids feel comfortable in their office. This is what we seriously needed with Shelby. We hadn't gotten the switch done yet, but had a referral from our regular dentist. I asked Scott to track down the insurance information, as we don't have cards for our dental, and call this new dentist with that information so then I can call and set up an appointment. He does this, runs into hang-ups, calls me, and so-on. In the meantime, I also called our regular dentist to explain what I had discovered on Shelby's gum. They know her very well so I hesitate to even switch her from them, but I know that they have exhausted all their efforts to try to calm her. The wonderful receptionist takes the message immediately to the dentist who says that she needs to get on a antibiotic and have the tooth pulled. The dentist didn't feel comfortable, though, prescribing medication with all her antibiotic allergies so he recommended I call her Pediatrician. Called the Pediatrician, got more pedodontist (that's a pediatric dentist, if you didn't know) referrals and I was back to the phone calls to find a dentist to look at my little girl. Mind you, this tooth is causing Shelby no pain whatsoever. No fever, you know, none of the "typical" I-have-an-infection-in-my-body signs. Finally, the pedodontist who we were referred to initially says "don't wait until after work at 2 p.m. to get her on the antibiotic, get her on it ASAP." O.k., but I'm at work and can't leave. I call Scott to give him the millionth update on this saga and say "Can you go pick up her med and bring it here?" Yes he can? Whohoo! One hurdled climbed. That same dentist also says the tooth needs to come out and recommends we take her to an oral surgeon. O.k. so now I get 2 referrals for oral surgeons, but it turns out that one doesn't take children as young as her and the other is on vacation. Rats! So...I put in a call again to our trusty regular dentist. They give me more names to call. Monday Shelby will meet with the oral surgeon and most likely they'll pull the tooth Tuesday. The antibiotic she is one will probably hold the infection at bay so it doesn't spread. I even called her transplant team to make sure they were o.k. with all this. They are. O.k. so that brings us to about Noon yesterday.

Shelby and I finish off the day at school and then head home for a quick moment before we jet off to Dr. Deutsch's (her ped. GI) for a check-up. Chicago o.k.'d us seeing him right now rather than dragging our butts in there. Thank you Chicago team! We had received a call from Dr. Deutsch's wonderful nurse Karin in the a.m. asking us if we could be there 15 minutes early for pictures with Dr. D. Fine. Can do. Turns out Dr. D was named the head of Pediatrics at the clinic and the college of medicine. Check out the article here. RR Star photographers were there to take pictures to go along with the newspaper article about him. He picked Shelby to get pictures with because, we'll, if you know Shelby, she is very charming and quite photogenic. I think she also sees Dr. D as a really tall buddy rather than so much as a doctor. Let's say that once she established with everyone "No shots and no x-rays, right?" she was quite comfortable letting him examine her. He talks with her a bit, checks her out, and then turns to talk to me. By the way, her liver is doing phenomenal. Who would guess that she has a nasty diseased liver in her cute little tummy?!?!?! Not me! So...Dr. D and I are talking about her awesome labs and I am firing questions at him. In the meantime, Shelby is carrying on quite the detailed conversation with the 2 photograhers from the newspaper the blink of an eye...she falls backwards off the examine table!!! I jumped out of my chair and grabbed her up and she was SCREAMING. She had every right to. She had landed on her head and shoulder. Dr. D. checked her out
again when she calmed a bit (the sucker he offered her helped some) and said she was o.k. We get home and Grammie goes to pick her up and she starts screaming again. I called back to the clinic and asked Dr. D's nurse to put in orders for x-rays because we were coming back down. The x-rays looked fine, Shelby was wonderful for them, but we believe she still might have a broken collarbone. We'll keep our eye on it (of course!) and keeping chugging along.

O.k., that pooped me out. I'll update more after the tooth gets pulled.

Tuesday, September 13, 2005

Time to move on...

I decided it was time to move on to bigger and better, that is for web pages. Welcome to my new site for updates on my girls! This will allow me to have more pictures, therefore, making me a very happy Mommy. So let's get started on those new pics - why waste time to show off my beauties?!?!

This is Miss Riley, age 5 1/2, on her 2nd day of kindergarten. Check out her hair! It only lasted half the day, but it was fun for Mommy to do in the morning. This summer Riley mastered swimming without her life jacket. She can now swim down to the bottom of a 9-foot deep pool, too! That makes Mommy's heart skip a few beats! She'll be taking swimming lessons this fall at our YMCA to perfect her skills a bit more. I see a swim team for her in the future...

Here is our little Shelby. Well, she's not so little anymore! Look at those legs she grew this summer! Those are some strong and fast legs, trust me. She keeps them moving all the time! Liver-wise things are going good for her. She was taken off the waiting list in June. This does not change the fact that she still has a terribly diseased liver. Biliary Atresia is a progressive disease - so there continues to be damage done to her liver even though she is thriving right now. Mind boggling, isn't it?!? For those of you who know Shelby, you wouldn't never guess that she has such an awful disease...but, she does. We are thrilled that she is not on the waiting list anymore, but at the same time we know how quickly things can change with pediatric liver disease. Very quickly. Like overnight quickly. Please continue to hold her in your prayers.

Oh, and for those of you who don't know us or haven't seen us in a while, here we are - the proud parents. This was taken at the Pirates over 40 (Jimmy Buffett cover band) benefit for Shelby earlier in the summer.

Take care and thanks for checking in!