NOOOOO

Looks like the little miss is completely on indoor lock down this week! (She's lost hair daily and two big chunks yesterday)

Playroom

Someone is loving her new playroom today! Addy is not a toy kid. She doesn't really play with toys. She will a little bit when you first give them to her then she pretty much just throws them out of her way :) Today she walked in there (I LOVE saying that!) and she's been actually playing for about an hour! I still have to put some finishing touches on the walls but it's just about complete:)

Read Read Read

Mommy went to a garage sale and Addy is beyond thrilled with her Zoobooks about chimpanzees :) She's rocking that short ponytail isn't she??

The verdict:: Telogen Effluvium

According to the doc this is what is happening with Addy's hair. It is a form of nonscarring alopecia characterized by hair shedding. It's a reactive process caused by a metabolic or hormonal stress or by medications. Usually recovery is spontaneous and occurs within 6 months. Both the pharmacist and the pediatrician agree that Addy's medicines are NOT the culprit. Most likely stress. Addy has a pretty stress free life, that's for sure! No real changes, however, we are pushing more oral feedings. She is not upset during feedings, but you can tell she would rather us not be feeding her orally :) One thing that does cause problems for Addy is heat. The heat for the last month has been horrendous here. Addy does not do well with heat and it could be causing internal stress for her :( Addy's scalp does not have any areas of irritation, no rash etc. Today she has been pulling her hair around the bald spot would we have never seen her do. It doesn't appear she is pulling any hair out when she's done this today, no hair in her fingers etc. Doc thinks it's due to the fact that it feels different and may bother her, not hurt her, just irritate

Haircut

I took Addy for her haircut this morning. It looks soo cute! She had several inches cut off. Becky (our stylist) said that her hair is really thinning. I mean Really Thinning :( She said the ends are tangling because of the thinning :( She honestly thinks it's either medicine or most likely Alopecia. We go to the doc at 4:45 this afternoon. After the haircut we went immediately over to the pharmacy to talk to the pharmacist. After he did some thorough investigating, there is no evidence that her antihistamine causes hair loss. So I guess we wait to see what her pediatrician thinks.


(this is her pouty face since I asked her to take her finger out of her nose and to step away from the TV:)

Trying not to freak out

(This is just a cute pic of Addy adoring herself :))

Last week while combing Addy's hair after a bath it was more tangled than usual. I put on her detangler and combed her hair, no big deal. I also noticed that some hair came out. Not too concerning, we all lose hair everyday. I just hadn't noticed her hair coming out before.

This weekend Scott was holding Addy and commented that her hair needed to be cut, it was getting a little scraggly (not sure that's a word). I told him that I planned on taking her this week, it is really long. I want to donate it but then it would be super short and I'm not big on super short on Addy, it looks really cute long. So I planned on calling tomorrow for a haircut.

We had a special visitor today so I didn't want to go for a hair cut today anyway!!! Laura really wanted Addy to look at the camera! Too bad Laura didn't look at the same time!

(this pic was taken right before I put her down for nap, you can sort of see the difference)

After Addy's nap she had this HUGE rat on her hair right in front of where her ponytail was. Two of my friends were here with me and saw me trying to get it out. It was pretty comical, I couldn't figure out how she managed to knot it this way. It has NEVER had a "rats nest" in it before! As I was working on it some hair was coming out. More than I've seen. Laura's mom told me that Laura's hair would come out from time to time and not worry about it. She said Laura used to twist her hair and perhaps that's what Addy had done ( I haven't seen her do this, however, she was in her bed for a nap when this happened) She and Laura left and I kept working on the rats nest. As I was working I picked up the "nest" to move it and it completely came off of her head! The entire amount! She now has a bald spot! I'm trying not to freak out. She did start her new med just a couple of weeks ago but I can find no information about hair loss being a side effect. Not on the info from the pharmacy or online.

So tomorrow I'm going to call the doctor to see if she wants to be seen. This amount of hair loss at one time does not seem normal to me at all. I'm going to take her to the beauty shop to have them look at her hair too. The consistency seems different to me, it didn't used to tangle like this. I don't think this is Alopecia but I don't know! Anyone else seen this?

Skirts

I love skirts and dresses on little girls. Having one that didn't walk we just didn't put them on her very much. She always got stuck on them! I love how she rocks her little skirt! You go Addy!

:)

Somebody is really glad that her bubbies are home from church camp!

What a difference a week makes

Remember my Ugh post from last week? Well I finally decided that I needed to focus on feeding full force. Forgetting about the lack of walking and the potty issues. I am focusing just on feeding. (Please note, I would now say that Addy is just about an official walker and has used the potty every time we've put her on it but I digress....)

Addy has totally taken to this syringe thing!!! She is doing amazingly well! She is actually swallowing the majority of what she is presented now! I am so excited and Ms. Kelly was ecstatic yesterday at therapy! Before Addy would take 40 "bites" she probably swallowed a total of 1/2 a bite. The jar of food looked like it had more in it after "eating" than it did before. Well check this out!

Yes this all went into Addy's mouth and was SWALLOWED!!!! It doesn't look like much but this is HUGE for her! I am sooo proud of her! I think she is finally figuring this out! The appetite stimulant appears to be working, Addy will sign "milk" when she's hungry so we are really working on the sign for "hungry" which she already knows, just didn't really know how or when to use it. When she signs "milk" I have her sign "hungry" then I present her with food, no milk. She's getting it! She is tolerating the food so much better, she's actually opening her mouth on purpose! The pic doesn't really show much, just more is in her mouth than on her chin! So we are going to continue using the syringe for awhile (we use the spoon at each feeding too, just fyi) and celebrate this huge step for our girl! I'm so proud of her!

This is just because it made me very happy! I at least had half of my kids home! Jarika had to pick up a hair straightener in Marshfield, I was happy to have her home for a little bit! I even made her favorite chicken enchiladas which are a total pain to make but it's worth for my big girl!


Today is going to be even hotter than all of these other miserable days we've had. Please cover my boys and everyone at camp in prayer that they stay hydrated and as cool as possible!

Missing

I was checking out the newly posted pix from Camp Galilee on Facebook just a bit ago. Both of my boys are there and we don't pick them up until Saturday, they've been there since Monday. I finally saw a pic of one of my sweet boys and now I'm blubbering like a baby.There's my boy reading the Bible with his friend, Landon. What a beautiful picture!

Good Walking :)

Make photo slide shows at www.OneTrueMedia.com

Swimming party

We went to a swimming birthday party for a good friend of ours. :)

You have seen pictures of Miss Laura before :) I have known Laura since she was about a year old. She is precious! She is also a big reason we have our Addy :) Laura is turning 16 next week and she's been planning this birthday party forever! So glad we were invited, we had a lot of fun! Happy Sweet 16 Laura!

Ugh

Feeding therapy is just not going the way I was really hoping it would. Addy made soo much progress in the beginning, her therapist and I were both really pleased! The last couple of weeks I've noticed that Addy is really just sort of going through the motions with eating. More is coming out than going in. She seems to have regressed in this area some. So Kelly (her therapist) had mentioned that the next time I take Addy to the doc to talk about changing tube feedings around and adding an appetite stimulant to see if it makes any difference. We saw her new pediatrician on Monday and she had no problem prescribing it to see if it does anything.It will take a few days before it kicks in so I guess we'll just wait. I just gave her her first dose this morning. Yesterday at tx Kelly decided to use a syringe to see if we can get the bolus farther back to help decrease some of Addy's tongue thrusting. It helped and Addy was none to pleased about it. She still spit a lot out but she did seem to actually swallow some.

Today I pulled out the syringe at lunch. You can see Addy's reaction.

She kept asking for milk and pulling her shirt up. We are really trying to stress to her that we eat with our mouths, it's hard for her to understand. I don't think she feels hunger. When I hear her belly rumbling I always say things like "you're hungry", "you need to eat" etc. However, it's usually around the time for a tube feeding so naturally that would be her thinking! Sooo, we have a long road ahead of us. I am really hopeful that we eventually get off of this feeding tube!

There's a tiny hint of orange, maybe a mL or two actually got swallowed!

This is what I found when I cleaned out Cooper's drawer in the bathroom. Apparently he never throws his toothbrushes away!

I Love Her!

I was getting ready to Addy to the doctor this morning. She had some tummy issues over the weekend so I thought we better go on in. This is what she did while I got ready:




Little stinker! I guess she didn't like the hair accessories I had already put in her hair, she managed to dump quite a few out onto the floor!

We got to see Addy's new pediatrician today. Her pediatrician retired at the end of June :( I loved him, he saved her! Remember the whole starving issues???? Anyway, I am very pleased that I really like his replacement! She has a lot of experience with critical care so that's always a plus!!! I just took a stool sample with me this morning so she sent that off to the lab. I'll hear tomorrow if there's anything brewing. It's probably just a virus but with Addy's significant history of C-Diff we never risk it! Since she has had so many diapers over the weekend her bottom is pretty raw. Usually docs just tell me the usual: don't use baby wipes (we don't), keep a barrier on her (we do) and change her frequently (we do that too). But today, Dr. Roe prescribed what she calls "Butt Magic" :) it's Nystatin powder, zinc oxide and hydrocortisone. Cool! At least I thought so till I picked it up, $22 and insurance wont' cover it! I think I could have mixed it up for far less than that! Hopefully it will help. If it doesn't she wants the mix made with stoma powder instead. We have stoma powder on hand so we may make up our own!

Looking forward to a quiet week, it's unbelieveably hot and Addy is miserable the second we go outside :( Hoping she improves by Friday, her birth parents are coming for a visit and we have a pool party for a special someone :)

Quick Trip to KC

The three princesses :) Addy was standing in a chair and was refusing glasses, showing her stinker side!

The kids and I took a quick trip up to Kansas City so we could meet up with the Garcias as they traveled their way to Colorado Springs :) I felt so bad for them, moving is so exhausting no matter how far you go and they are going across states with 5 kids!

When we got to the hotel the kids played on the bed (hotel tradition) and then we went to swim for a while. I got no good pix of the swimming but some cute ones of Jake and Addy wrestling! She absolutely loves rough housing with him!



When Frank and Renee arrived we went to eat at Jack Stack BBQ. It was really good! We even had a room to ourselves :) Renee said that they saw all of the kids and thought keeping us apart would be a good idea :) The kids were so good. Poor Kennedy was not feeling well at all :( I felt so sorry for her! Once she ate she felt better but she sure was pitiful for awhile! I wish we could have visited longer but I know how tired they must have been!

This morning we slept in and were pretty lazy getting moving. I figured Renee was well on her way to Colorado but once we got to the elevator she peeked out of her room. They had had a rough night (poor Keeghan was up all night with leg pains) and unfortunately Frank and Kassidy were at the emergency vet. Poor Kass' guinea pig was sick and ended up not making it :( I feel so bad for her, she is a very sweet young lady. I hate that she lost her pet and is so sad :( So the Garcias got out much later than they planned, keep them in your prayers as they make it to their new home, what a rough trip for them!

I know this is what you really want, pix :)

The kids being goofy :)

Jake and Kellsey :)

Kassidy and Addy. Addy loved her!

The whole gang :)

Keeghan, Addy and Frank. Keeghan was seriously cracking me up! There is a reason I love working with 4 year olds!

Thanks so much for the visit Garcias, enjoy your new home in Colorado!