So Big :)

Addy has finally outgrown her baby bathtub :) She's six and a half but ya know when you finally grow you finally grow! It cracks me up that she continually says "Addy swimming" while in the tub :) Her poor face is so broken out due to a sinus infection that she keeps rubbing the snot up her face and into her eye, nice right? Gross lol.

We went to St. Louis yesterday with Addy and Little Man. Our DS nurse practioner (who we adore!) was sooo excited to see how amazing Addy looks! Last year she was below the 1% on the Down syndrome growth chart, now she is 5% for weight and 25% for height!!! I'm wondering if that's switched but anyway, she's on the DS chart finally!  We went over her history for the past year and was so bummed to hear how sick she had been but was thankful that we have a great doctor that is very on top of Addy's care. She completely agreed with putting Addy on Homebound this year. It was truly best for her, she just could not stay well. Fortunately her bloodwork showed that her pneumococcal tiders are now within the normal range so that should help with preventing pneumonia. We can hope right? She was also pleased to hear about her academic achievements considering she was home for three months. She reads about fifty sight words, counts to 100 (with help at the tens),knows her colors and five basic shapes (she knows more but on her terms of course) understands rhyming words and is doing well with positional words. Her weakest area is definitely fine motor skills and compliance. Addy is famous for showing she can do something a couple of times and then that's it, she showed you, no need to do it again in her mind lol. She was writing her first name before she got so sick but now it's just the A so that's on our daily practice agenda right now. Our NP asked about her services for first grade and encouraged inclusion. We are happy with Addy's services and feel that it will be a good fit for her. She will be in regular ed 68% of the time. She will be getting 60 minutes of PT (decrease from 90), 60 minutes of OT, 30 minutes of Adaptive PE, 90 minutes of speech/language (decrease from 120) plus resource for reading, math and writing. We asked for her PT and ST be decreased so that time can be spent on academics. She's going to have another fantastic teacher so we are very excited :)

We saw her opthomologist and he changed her script just slightly to help with her astigmatism. He also suggested we try Miraflex frames to see if that will help with her continual removal of her glasses! She wears Specs4Us right now and we've been very pleased with them but she does NOT like wearing her glasses at all :( He assured us that the frames look a little big and bulky but the have no pressure points so the kids wear them better. I don't really care how they look, I just want her to tolerate them!

Little Man also got a Rockstar report. He is truly amazing! He is 12 months old and eats like a champ and prefers to feed himself. He babbles all of the time and will hopefully start signing soon. His gross motor skills are very on target. He crawls, pulls to stand and is thinking about cruising. He crawls everywhere and can get into a sitting position with no problem! He is finally using a pincher to pick up food but prefers to rake. He will only eat with his left hand, he acts as if his right isn't even there. He uses it all of the time to play but eating, no way, he'll cross midline to reach food on his right side lol. Stinker We skipped his ENT appointment because we just saw ENT in Springfield last week. He passed his hearing eval but had flatline tympanograms in both ears so tubes are being placed on the 4th :) Really hope that helps him! These sleepless nights are making for one tired mama! His eye appt. went well, his prescription actually has improved but his eye drift on the left is worse. Soo the plan is to go back in six months and at that time we will determine if he needs glasses or surgery for strabismus. I sooo wish I could show his face, he is such a cute little thing, I swear, absolutely darling!

I took Addy into her ped today since I was pretty sure she had a sinus infection and sure enough it appears to be. So she's on Zithromax, hopefully that will help her feel a little better too :) She starts summer school on Monday, I think she misses the structure :) I will work two days a week in June then I will officially be done. I'm excited about my new job and can't wait to see how our family is blessed from this opportunity. It makes me have some peace knowing that I should have a day or two off during the week that I can make appointments for the kiddos when needed :) We're having a hard time finding private insurance though, both of our jobs don't have medical benefits. That stinks! So I will be doing so more research on that tomorrow. Wish me luck! No medical insurance is not an option!

The River

We took off to a river close by today for a little fun. We've had no other big plans for Memorial Day weekend so the river it was! My dad was cremated so I can go and decorate his grave, there's times that I really wish I had that opportunity.

It was a gorgeous day and the river was a perfect place to go today, not crowded and close to home. I had no intentions of getting wet :) I did want to just wade in the water a bit and before I knew it the sand/rocks/slush underneath me gave way and down Little Man and I went! I did keep him above water though! He didn't even cry! I was stuck on my knees keeping him out of the water and they took a beating lol. They don't look too bad but man they hurt!

Daddy saved Little Man from the icy water :)

 The boys had a blast swimming all over the icy water, Addy was happy as a clam on the sidelines throwing rocks into the water. If she has something to throw, she's a happy girl. After a couple of hours Daddy finally convinced her to at least sit in the water with him. She was filthy, it was so cute :) HOWEVER!!! When I got her up and out of the water a LEECH fell off of her! Freaked me out a bit but she seemed fine. I changed her when we got to the car and her swim diaper was full of blood! I was sure she was goingng to have a huge bite but she doesn't. There's definitely a hole where it attached to her but fortunately it's no longer bleeding and the doctor on call assures us that's there's no need to be concerned if the bleeding doesn't come back. This girl is such a trooper!

It was a nice day with the majority of my fam (Jarika is working today in Joplin), now we are all bathed and relaxing, I'm soo happy it's summer!

Pudgie :)

Addy saw her nutritionist yesterday and our girl is now officially a CHUNK!!! She weighed 36 pounds!!! She's gained 9 pounds since Christmas, six of those since the beginning of March!!! Sooo she's actually gained weight too quickly so we are backing her feeds up a little bit and checking her again in two weeks. Addy is cleared to go back to school on Monday (woo hoo!) and she will be much more mobile again :) Not that we want her to lose any of the weight she's gained, just not move forward this fast :)

We are also still looking into what is causing the infection in her gut. We do know that it is not C-Diff, still not sure what it is.

I also had to take Little Man back to the ped for the ten millionth time I think and sure enough he continues to have double ear infecions and was referred to the ENT for tubes.

Immunology

We were finally able to get Addy into the Immunologist today. She was supposed to go last Friday but since she'd been sick for a week with the tummy stuff we had to postpone. As you can see, she is feeling pretty darn good right now! Her pediatrician ordered yesterday for her Home-bound services to continue until April 22nd because she is still seeing a ton of illnesses in the clinic. Little Man got over the tummy bug in two days it took Addy eight :( I know he brought it home from day care but we are seeing tummy stuff at school too :(

We met with the Dr. and I think I'm going to like her but she feels that if all of the things that she's going to test come up negative that we need to push more with GI. I think we need to push more with GI anyway but we (and our pediatrician) aren't  getting anyhere. We may have to go to Kansas City at this point. I did NOT like the GI from KC that was  Addy's first GI at all so I just don't know.

The doctor today decided not to put Addy through environmental allergy testing that just doesn't seem to be an issue. (I agree with this). She feels that it is probably a malabsorption problem or an autoimmune disorder. I think she's ordered just about everything to check these things out. She did notice that her liver something (I can't remember what it was) was high while she was inpatient in January.

She ordered a lot of blood tests. She is also going to have a sweat test to rule out Cystic Fibrosis next week. I'm not sure why we are doing this because she was tested for this as an infant before we adopted her, but we will do what we need to to help our precious girl!

We went to the lab to have blood drawn. After an hour and six pokes with no blood we were sent to the hospital to see if they could get it. My amazing little girl barely whimpered and laid as still as can be as the techs kept jabbing (nicely jabbing, they were VERY gentle) her little arms trying so hard to get her blood. I gave her a bolus feed before we headed to the hospital to give a bit more hydration to see if that would help. When we were taken back the lab tech said "Oh Addysen, I remember your stubborn little veins!" Uhmm sorry??? I didn't recognize her but we've seen a TON of techs in our lives! They warmed Addy's little arms up and first poke got some blood! However, it was just one vial and they vein turned on her :( So they had to switch arms and try a few more times before the other 10 vials were drawn. Yes, Addy had 11 vials of blood drawn! My amazing little trooper! If she liked candy she could have all of it she wanted after the morning she had! I'm sure she's going to be more bruised tomorrow, I think she looks pretty amazing tonight!

 The tests that were ordered were: CBC+diff, Vit D, CH50, IgG, IgM, IgA, tetanus ab, H. flu ab, S. pneumo ab (23 stereotypes), mannose bidning lectin, T and B cell quantification by flow cytometry, lymphocyte proliferation to mitogens (pokeweed, phytohemagglutinin), and antigens (candida, tetanus), neutrophil oxidative burst test and the sweat chloride test.  She is also running another stool work up to look at fecal fat, and  fecal WBCs. We probably won't have the results of everything for three weeks so that's frustrating but we've waited this long what's a few more weeks?? Not that I want something to be wrong, but I sooo hope we can find something to help her stay healthy!

Swallow Study

Well, Addy ROCKED her swallow study yesterday. However..... it was full of some valuable feeding info for us. It showed that she is not aspirating of any consistency, yeah! Buuuuttt it did show that she is extremely guarded when she swallows. She takes a long time to initiate the swallow and she is holding quite a bit under her tongue before moving it back to swallow. So we are going to continue working on increasing the bolus size and hopefully the sensory issues will continue to decrease. She's not going to love this by any means but it's necessary if we ever want her to eat orally. I'm at the point that I'm thinking that she may never eat by mouth. That's ok, I just hate it for her, I definitely enjoy eating!

She does love to help Little Man eat though, lol!

Starving

You know nothing hits you harder than finding out that you have been starving your child for the SECOND time in their life!!!

When Addy was almost three we switched doctors and found out that she had been on a supplemental formula for almost two years and was basically starving. So we went through a bunch of different formulas with a nutrition to find our liquid gold Elecare. It is seriously the only thing that Addy tolerates without throwing up. Anyway, Addy has been on the exact same amount of formula since she was three. Mind you, she is SIX. Whenever we have seen the DS Clinic, our pediatrician, GI etc. no one was too concerned about her feeding since "she's growing". Addy has only gained 8 pounds since she was 3. Granted, she gets sick a lot and always loses weight when she's sick but still.

(I had to really doctor this photo, Addy has rubbed her little face raw!)

Since these past hospital stays in January and the prospect of malabsorption was brought up our ped has referred us to many places since the GIs in St. Louis don't seem to think it's an issue even though she has ALL of the symptoms.

Our first appointment was Friday afternoon with the nutritionist. Her former nutritionist works at the hospital  now and actually came and saw her while she was inpatient. Anyway, we spent quite a bit of time at this appointment. She spent a lot of time figuring out exactly how much Addy should be taking in. Well, she has been taking in 840 calories per day. Yes you read that right, 840!!! For a six year old she should be taking in 1200-1500!!!! So our first plan of attack is to increase her daily feeds until she is at least taking in the minimum amount of calories. We are adding 40mL of formula to each feeding for a week then increasing another 40mL until we get to 360mL per feeding. I can't believe that this wasn't picked up on before :( We never had a follow up with the past dietician so that's probably why. We are going to be seeing this dietician monthly until Addy is at least at the 5% on the growth chart.

Addy is going to have a modified barium swallow study (with our amazing feeding therapist) on Tuesday and then she will see an Immunologist on the 22nd. She will be having full allergy testing performed as well as blood work to look into malabsorption and immunodeficiencies. I'm hoping that we will find out what keeps her from getting so sick and keep her healthy and have her become a strong, healthy, little growing girl!!

School???

Poor Addy! Every morning she asks if she can go to school! She is missing it something fierce! On Monday her ped cleared her to go back to feeding and music therapy but says no school until at least April! She wants us to keep her away from big crowds if we can to protect her from getting another respiratory infection/virus etc.  She has also been conferring with GI in St. Louis and things aren't really going anywhere!!! She and our pulmonologist are really thinking that we need to look more into this possible malabsorption issue but so far GI is thinking that's not the problem. Soooo frustrating!!! Addy is scheduled with an Immunologist on March 22nd and is seeing a nutritionist on March 8th. She is also going to have complete allergy testing. Our ped is still working with St. Louis on what we can do to rule in/out malabsorption.

So right now she is home and bored :( I try to set out several activities for her to do during the day with her nurse but it's not really happening. By the time we get home and settled for the evening she's pretty tired. It's looking that we will possibly have a snow day tomorrow so I may just have to  push her some so she doesn't lose all of her skills!! She's reading really well and doesn't appear to be regressing academically but she definitely is physically :( she's being very ummm lazy!!!