Playing with Daddy

Addy LOVES to fly with Daddy!

Saw the Nutritionist!

I am feeling so good about Addy's appointment with the nutritionist today. I'm quite frustrated that we didn't see a nutritionist well before my daughter was a failure to thrive, very malnourished child, but I digress. Addy has been taking in the amount of calories that an infant needs to grow and develop. She is almost 3! Addy was born with significant bowel issues, duodenal atresia and imperforate anus and had a colostomy for 14 months. I have blamed her increased stool due to the duodenal atresia and the anal malformation but nope, it's pretty much nutrition! I am letting go of my anger about this, even though I did ask about her weight loss and lack of weight gain EVERY doctor appointment and was dismissed (until we saw new pediatrician!). It's very frustrating that a child's most important brain development occurs during the first three years of life and my daughter who I believe has a very loving home and parents who want the absolute best for her, she has been deprived and I am sick about it!!! It just goes to show that doctors don't know everything and you just have to keep pushing for your child. I am letting go of the anger and the guilt and thanking God that her new doctor listened to me and pursued more information about Addy's health! All blood work done on the 19th came back normal including the Celiac panel so I am pleased about that! So onto what we are going to do for my angel! She is going to have another blood test to rule in or out food allergies. It's pretty obvious that she probably has a milk/lactose allergy but the nutritionist wants confirmation since any food allergy could impact what sort of formula we can give her. However, she is starting a new form of "milk"!!! She is going to start taking Vital Jr. . She will continue having four feedings per day, but they will consist of 3 8 oz. feedings and one 4 oz. She will also be given a bolus of 4 oz. of water per day as well. She is also starting her on a Probiotic. "Probiotics" refers to dietary supplements or foods that contain beneficial, or "good," bacteria that are similar to those normally found in your body. Although you don't need them to be healthy, these microorganisms provide some of the same health benefits that the bacteria already existing in your body do — such as assisting with digestion and helping protect against harmful bacteria. I can't remember the name of the one she is starting on but I'm excited about what it may to help Addy. I've researched them before but since she is medically fragile I have been hesitant to try any on my own and naturally old doc didn't support them. So hopefully we will see a much healthier little girl! I am amazed at all she is doing lately, she has about 30 signs now and is actually crawling. Her hair is also amazingly beautiful! I can only imagine what she's going to do when she is properly nourished!!!

FYI, Jake's baseball team won the championship game last night! His team was undefeated and they all got t-shirts! Way to go Jays!

Random sports pix

Jarika cheered at the opening Jamboree Friday night in Camdenton, I didn't good pix but I have the whole season for more! Avery played his second to last baseball make-up game tonight. Scott had the camera and went a little crazy! Enjoy!

Health news

I got a call from Dr. Pediatrician today and Addy's CBC was normal, Electrolytes were normal, Blood Sugar was slightly elevated at 122 and still waiting another week for Celiac Panel. I then immediately got a call from Ms. Dietician and we go in next Thursday. When we went over her diet she told me that the formula she is on (Enfamil Prosobee Next Step) is NOT to be used as a sole from of nutrition!!!!! It is to be used as a supplement! You would think that at least one of all of the doctors this child has seen would have known this!!!! So I'm pretty positive next week will have a new diet! She is also ordering a test for food allergies since it's pretty apparent she has a milk allergy. She was "diagnosed" with this just by history, no "proof" so we will probably look into that further next week as well. So I feel pretty good about the plan right now, I just feel horrible that she has been on this formula for almost two years and shouldn't have been!

Weight Check

Well as usual, Miss Addysen has proved to be a stinker once again. A couple of weeks ago the doc ordered her feedings to increase by 20mL per feeding to give her a little more calories to help her gain some weight. She is TINY! Ask Charissa she agrees! Well Addy weighed 18lbs. 13 3/4oz at her last visit which was around the 25th of July. Today she weighed in at a whopping......18lbs. 10 oz. Yep, lost more weight!! Oh this girl! So, now we are going to mix her formula to a 24 calorie strength, see a dietitian (which we are playing phone tag with and she's it), and we did a lot of bloodwork consisting of a CBC, CEP, Celiac panel, thyroid function and somthing else that I can't remember. Fortunately the phlebotomist was able to get her on the first stick. That's pretty much unreal for Addy! She was quite put out by the fact that she had to wear a band-aid on her arm for awhile. She's still mad about it and keeps holding her arm up to me and whining even though I took it off forever ago! So now we wait for the bloodwork to come back. If everything is normal then we are looking at finding out whether or not she is absorbing correctly. I don't know what that will consist of, I'm sure more tests. Poor little thing! She looks so frail and her ribs still stick out and it makes me so sad! Hopefully we will have answers soon!

Oh to be so flexible

First Day of School

I can't believe my kids had to start school today! It's so early! They all had a great day and were happy to be back. I officially have a SENIOR!, 5th grader and a 3rd grader. Avery has decided that he now wants to go by Jake so I'm going to try to honor that but I'm sure I'll forget. (his middle name is Jacob btw :)) I start with students on Monday so today I just helped out some and worked in my room. I only had a few lost kindergartners to rescue so I think it was all in all a good day! The bottom pic is from 07, I couldn't find 08! I know I took pics, oh well you can still see the changes!

Busy weekend

We have been so busy this past week and weekend, I'm beyond exhausted! We celebrated Addy's Gotcha Day with some bright pink cupcakes! She enjoyed licking the icing but didn't really eat any of it but she did like it!

Jarika had a run through Friday night for Regional Cheer Competition yesterday. I couldn't take flash pix during the competition so these are from the rehearsal. The squad is a really young inexperienced squad so I didn't think they would make it to state this year. It didn't help that Jarika's ankle injury messed up the ending so they had to redo it just three days before they competed. They had her basing a stunt and that puts a lot of stress on her ankle, however, she didn't want to do nothing so she went ahead and did it even though she knew it was bad for her ankle. Yeah, sprained it again so no more basing, we are going to an ankle/foot orthopedic specialist to confirm this information again though. Anyway, there were six squads in their division and the top 5 make it to state. I'm a former cheer coach and cheered in high school so I have a pretty good handle on the sport. I watched and knew there was no way they would be in the top five. Their routine just wasn't very impressive and didn't have much difficulty in it. Our girls also don't show a lot of spirit that they needed too. I'm always on Jarika for that! Anyway, after they competed Jarika was allowed to leave before the awards so my mom and I took her out to eat. On our way home she got a text from her coach saying they came in 5th!!! WHAT??? I thought there's no way! Well, there is a way when two teams tie for first! So our Varsity Jays are making it to state this year! I know they will have a much better routine and it will be more impressive by November, they will have a lot of time to clean it up and add more elements so that will be good.

When we got home from competition, our church was having a swimming party at the local pool. Jarika was too tired to come with us so the five of us went. Addy didn't care too much for the pool last year but this year she liked it! She didn't like being spun around or anything like that yet, but she loved being carried around completely submerged, except for her head of course! There's a ledge at the side of the pool so sat on that and kicked her feet and splashed with her hands and laughed and laughed! It was too cute!

Remember how Avery just learned to dive at the lake last weekend? Well look at this! Way to go buddy!

Cooper is doing so much better in the water, he had fun twirling around and around. Our poor pastor was dunked and dunked and threw the kids all over, Scott told him that he would probably feel that today! I didn't get a chance to ask him, we all way overslept this morning! So I am spending my very last day of my summer vacation, cleaning and doing laundry, trying to get organized again before going back to work full time! I'm never ready to go back but I'm sure after I'm there tomorrow I'll be fine, I gotta go back sometime huh?

It's Gotcha Day!

When I first met my daughter 8/4/07

Our Gotcha Day! 8/6/07

Make an on-line slideshow at www.OneTrueMedia.com

Jarika performs at the Cardinals Game

Last night was Marshfield Night at the Springfield Cardinals baseball game. I really do enjoy going to the games, they are a lot of fun. Unfortunately it was sweltering HOT! I hooked Addy up to Pedialyte so she wouldn't dehydrate, one of the benefits of a g-tube! She stayed hydrated but got pretty sweaty so we only stayed a couple of innings. Jarika was worn out and had to go to work early this morning. Well, early (9 o'clock) if you are a teenager trying to enjoy your last days of summer vacation! Scott and Avery stayed until the end of the game, unfortunately our baby birds lost, but the big birds (St. Louis Cardinals won, thanks Albert!) The girls did a good job performing,they are getting ready for Regional Competition this Saturday.

Addy Update

I heard from Dr. Pediatrician yesterday and we are increasing her feeds by 20 mL per feeding for a week. If she tolerates it okay then we will increase another 20mL per feed. He also referred her to the nutritionist so we will most likely see her in the next couple of weeks to see if she is on the right formula and calories and whatnot! I took her to the surgeon today, well actually his nurse practitioner whom we adore! She rechecked Addy's little booty and said that it is doing great so no more dilations! Woo hoo! She is going to check her again in a month just to make sure the scarring hasn't returned again but that's no biggie. She also filled out an order for Addy's nurses to treat her g-tube site with Milk of Magnesia a couple of times a day while I'm at work. Yes, I have to go back to work Monday! UGH! Anyway, I've been treating Addy about 3-5 times per day with the MofM and her site looks TONS better! I've tried this before and didn't see much progress but now there definitely is! Yeah! After the surgeon, I dropped Cooper and Avery off at Aunt Jill's for a little cousin and Rock Band time so I could take Addy to the ENT. We also did a hearing evaluation and she passed with flying/blazing colors! Yeah! She also had normal tympanograms so the ENT feels like things are going ok and he doesn't need to replace tubes unless she has more ear infections so this is good! Tomorrow is Jarika's turn for the doc. She re-sprained her surgically reconstructed ankle so the doctor referred her to a podiatrist and we get into them tomorrow so hopefully we will get some good news!

Weekend at the Lake

We finally got to go and spend some time at our cabin at Tablerock Lake. We've been so busy that we have been neglecting our down time something awful and I go back to work on Monday and the kids start school next Thursday!! We are planning to try to go three or four more times before it starts getting cold, so I'm hoping these aren't the last lake pix of the season!

Avery finally learned how to dive!

Cooper on the boat, he is NOT a lake water person!

My darling Addy boo!

Avery LOVES the lake!

I LOVE this pic of Addy, I don't know why, it just is precious to me! I think I may be getting a tad bit better with my camera!

Jarika and Avery on the Wave Runner.

Jarika and her friend Kelly.