Misc. Thoughts

This week is Lauran's transfusion and I am very interested to see what her Hemoglobin is at prior to transfusing. She has followed her usual pattern the week leading up to her transfusion. She has gotten lethargic this week, has had less of an appetite and is more picky about food, and at times is very moody. She has had a couple of extreme tantrums too. She was doing a lot better this month with the tantrums so she is I am thinking she is just more easily set off due to not feeling well. This afternoon she came home from her hearing test(which she passed with flying colors) and she crawled through the door into the house. She would not stand up. She looked so worn out...and that is with a 2 hour nap today. She actually asked for a nap the pass few days! Her energy seem worse than last month so I am curious if maybe she is lower at the 4 week mark than last month. We will see!

We are planning on trying out some new fun to keep Lauran busy at the hospital this month! A cyber friend of mine who has a little boy from China with Thalassemia gave me a great idea. She suggested I do manicure/makeover stuff ...and I wonder why I hadn't thought of it myself. Lauran LOVES that sort of thing!! So hopefully she will have fun!! So check back for some "princessy" (OK...I don't think that is a really a word....but you get the point!) photos to be posted soon. I tried out the dress up stuff with the girls last week...so I have posted a preview! I will get a close up next time so you can see the makeup better... they have lip gloss and eye shadow on :)

Lauran received some new dress up clothes for her b-day from her aunt Kristi.....that she even shared...and tried out with the makeup :)

On the brighter side ...my sweetie is picking up words like crazy! She uses English now to ask for things ...which helps a lot! Ironically, even though we use the word dog all the time...even prior to getting the puppy...she still uses the Chinese name for dog(gou-gou). And she still refers to herself as Tian -Tian. I almost feel bad that I changed her name. She responds to Lauran but calls herself Tian! Anyways...my favorite is still..I LUB YOU! Which she learned right away in China and says about 20 times at bed time!

As far as the puppy goes....I plead temporary insanity!! Just kidding :) House training, however...... well it stinks....literally!! Luckily it is nice out and we are outside, so we keep her out a lot. We have had more than enough accident indoors though! The kids(minus Ryan) love her though. She is a very playful and cuddly dog too! I know in the long run it will be great for them. Ryan does tolerate her pretty well.....considering all he is dealing with in his mouth:(

Doctors and Dentists and Driving...Oh My....

......and now add a vet to the list :) More on that in a minute!

My summer thus far can be summed up with those three words! Trips to the doctor, the dentist and more time driving in the van than I ever thought I could do in a few months. The doctor visits are obviously mostly Lauran. She has had several transfusions, blood draws, an EKG and Echo, an eye exam and will soon have a hearing test. Recently though, she has had her 1st dentist appt. I definitely had concern about her teeth from the get go. The 1st brushing in China was not pretty. So last week she had her first dental exam. She was not interested in letting them in her mouth. I am sure she thought they were going to do something painful and horrible....and really they just wanted to look around. They managed to get in there long enough to determine she has at least 12 cavities and some are so decayed they may need capping. In order to evaluate her completely, and do all the work with out traumatizing her, they are going to send her to Children's to go under. They will do all the x-rays and the work all at once. It will probably wait till the fall...they have to coordinate everything with Insurance first.

Pretty soon she will have pearly whites to match her beautiful bright smile.....that she was so kind to show off for me on my birthday yesterday :)

Other Dentist visits are for Ryan, who got his 1st set of braces on his top teeth today. He also needed something called a crib...which almost looks like a metal gate hanging from the roof of his mouth. The crib is to correct something called tongue thrusting. He apparently has to wear it with the braces for 12 months. It really impairs his ability to talk and chew and I am having a hard time figuring out how he will get used to it(which they say he will). He is not too thrilled to say the least and is very worried about the kids teasing him....once school starts. You can definitely see it and he is very aware that his speech sounds very different. He will have to have another full set at some point, once these are off too..poor guy! He has a pretty complicated mouth.....with some major bite issues that could actually need surgery when he is older. I feel so bad for him.

But he did let me get a cute picture of him sporting his red and blue braces...and said yes I can put it on my blog:)




As far as the vet goes...well we got a puppy today! Unfortunately that made Ryan's day even worse..since he really doesn't like dogs at all...and is pretty scared of bigger dogs(due to some bad incidents when he was younger. This one should only get to about 15lbs. and is so laid back and completely mellow though....I told him God knew what kind of dog he needed, so we will see...hopefully he will learn to like her...cuz she is so cute and she really is sweet. The other 3 are thrilled though!! She sort of came along unexpected and Nathan has really been wanting a dog!! I said what the heck...the house is already a zoo what can one little dog do :)

Megan came up with her name. She named her after a Backyardigan character from Nick JR TV :)
So here is Tasha..the newest member of the family!














She is 4 months old...and crawls right up to Nate to cuddle!! She is Lhasa apso and Bishon mix!

And the driving of course come along with all the appts. and activities. It is way more crazy busy this summer than I had imagined. I struggle to keep things balanced..but who doesn't..right! God has been teaching me a lot about cherishing the moment in front of me with my kids. I have watched all 3 kids really bond with Lauran and it is amazing to see that happen. The boys are great big brothers to both girls and Megan has started to come out of her shell this summer. Lauran has become a Daddy's girl ...which is not only adorable, but very helpful to have her want to go to Todd. She still calls him Ba Ba....which is Chinese for Daddy. Anyways...that sums up my summer thus far. Doctors, Dentists and Driving...Oh My! Oh and now vets!

Lauran's Reality

The week leading up to Lauran's transfusion I really thought about her reality in regards to her blood disorder. I think because it seems as though we have gotten a firmer pattern on how often her transfusions will be needed and I can see more clearly how that will effect her life! I do not want to over dramatize it...I know there are SO many children with illnesses or disorders that are so much more debilitating than Lauran's. Hers takes a lot of maintenance and monitoring but is not life threatening. There are medical issues that need to be closely monitored...such as her iron overload, which at some point can threaten her health. However, to stay in good health she is completely dependant on getting blood every 4 weeks. Although she can't process the scope of that, I have begun to learn how close to the front of her mind the process of getting a transfusion truly is for her. She plays the process out almost every day...something I saw even more this weekend( more on that in a minute)! She will always deal with days of not feeling great due to being anemic. She will visit many doctors and have many tests through out her life that most children never will. Anyways, my point is just that Lauran's reality is different than other kids and I guess my mind sort of fixated on that for a few days. I am so thankful God chose us to walk this journey with her!



So I thought I would try and take pictures of Lauran's day at the hospital on Thursday....if she allowed me to do so. It is a part of her life so I wanted to get some pictures of it. Last month she really was unhappy most of the time. She refused to eat and really wanted nothing to do with her toys or the TV. She just wanted me to hold her so I scrapped the picture idea. This month she did so well. They had to try 3 times for a vein..and she only fussed a little bit!! I couldn't believe it! They still rewarded her with a new Barbie ..which thrilled Lauran :) She also played (she loved bringing her new backpack and Polly pockets)and ate and SMILED! Her first smile during a transfusion! She still had her moments..but who wouldn't! It was a 6 hour day at the hospital...and almost 4 hours of being hooked up to the IV.



OK...so back to her having her transfusions on her mind. On the 4th of July we went to a local park for fireworks. Lauran loved them...but about 8-10 minutes into them she starts to get a little bored ....you know, shes seen one fireworks, shes seen them all, attitude! She starts being a little silly and playing with her glow stick we bought for each child. Nathan is laying by her on his back on the blanket watching the beautiful and loud fireworks. I look over and Lauran has turned away from the fireworks, towards Nathan, and starts going through the entire process of getting poked with a needle on his ankle.....including tapping his leg hard to find the vein. Then pretends to screw on the glow stick(I am assuming that was supposed to be the tubing they use for the transfusion). This is something she does with all the kids at home all the time....minus the glow stick. I guess I was just shocked and saddened a little that she was thinking about it when we are in the middle of a fun activity. Maybe it just seemed odd that is what she picked to do during the fireworks when she was bored. Not get up and run around or fling the glow stick in the air or maybe goof around with Nathan...but she decides to give him a transfusion. Most kids saw the glow stick as a necklace, bracelet or a Frisbee......Lauran saw it as medical tubing. THAT, is her reality!! Maybe she just thinks it is fun to re-enact it.....I really have no clue. From my vantage point, it just seems like she thinks about it an awful lot!!

Ok ...so here are the pictures from Lauran's day at the hospital...in slide form again! It is so much easier to do a lot of pictures that way!

4 week transfusion schedule is a keeper

Lauran will be having her transfusion this week. Her hemoglobin was in the high 9's early this week so we kept the appt. we had scheduled for tomorrow. We were hoping maybe we may be able to stretch it to 5 weeks. In addition to checking her hemoglobin each week they also do another test ....which at the moment I can't remember the name ....which checks how hard her bone marrow is working to make new blood cells. As her blood gets lower that number gets higher. When your bone marrow works too hard it begins to stretch out your bones and can cause them to become brittle. So they want to transfuse at a point where her bone marrow doesn't go into overdrive for too long. That test and her hemoglobin test were both in the range on Monday that they feel she should stay on a 4 week transfusion schedule. The good news is that we will no longer be doing the weekly blood test. I believe we may need to do one blood draw in between transfusions but I need to double check that for sure. She is doing so much better with getting the needle pokes though!! She barely fused this week when we had to do the blood draw! A huge answer to prayer!!

So tomorrow is another long day at Children's!! Lauran has definitely been showing signs over the last week of being anemic. She has had less of an appetite and definitely more sleepy. Last month she was very restless during the transfusion. I am hoping our recent purchase with birthday money of a new video and polly pockets will help!! I can only hope:)