Some new things

So last week we had our appt with the endocrinologist to discuss Mallie's growth. She is still so very small she qualifies for growth hormone therapy. It will be daily injections of the hormone thru a small pen. Similar to what a diabetic uses for injections. I have been tossing the idea around in my head for awhile but really did not do much research because I knew we did not have to think about it for awhile. Well that while is knocking our door down. The dr. said some side affects could be increased appetite and increased muscle tone.....well then - SIGN US UP:) Kidding..I still am scared to death to give her a shot every day. I think she has been thru enough but this could really help her. So I talked it over with Steve and I think he is on the same page. Although he says he will not give her the shots and that I have to do it. How fair is that? I also met with the new Genetic dr to recap on Mallie. He pointed out a few things to me that I had not really focused on before. See Mallie has to chromosomes that are not normal. her 11 has an extra piece on it and the 18 is missing a tiny piece. Well both chromosomes can effect growth, meaning that even though Mallie has alot of the clinical findings of RSS - she is also got this 18 thing that can potentially be making her grow slow too. DOUBLE WHAMMY - I guess. All the more reason to give this hormone a shot. WE can try it for 6 months and see if it makes a difference and then go from there. So wish me luck - they will be coming out this week or next to show me how to do the shots myself. Mallie is going to hate me - I think.....Ugh - I don't look forward to this at all. But if its going to help her than so be it.

So she has been doing very well - still making lots of noises but nothing in particular. Sometimes it seems like she does but its random not repetitive. She tries to snap her little fingers during music - its so cute! MUSIC - she loves it. she dances smiles and claps - I LOVE IT. Also Steve has been working with her - when he asks - "where is Mallie"? she points to herself and smiles :) The fall is running away from us - time is going so fast. Our great friends John and Jen got married this past weekend. It was perfect - we are so happy for them :) It was so much fun to be apart of their day! Grandma Mary and Mallie had sleepovers during the festivities - Thanks to her for letting Steve and I have the weekend!

This weekend we have a special couples anniversary party and a not so great party - a going away for a friend heading back to Iraq. Grandma Tana is gonna hang with Little Mallie for the evening - thanks to her as well. Without them I would be glued to the homefront:)

Today Mallie had her 2 yr check up at Leikerts - she weighed in at 14 pounds and was 26.5 inches long. IN GR last week they got 25.5 inches and just under 14. Seems to be her length is always variable. Either way she looks good :) Had one shot today and now don't need to go back for a year, unless she gets sick.

Anyhoo - I am tired and promised myself I would go to bed early...yeah right - I guess. I will post some more info as we get started on the growth hormone.

A letter to Mallie on her 2nd Birthday!

Mallie - Year number two has come and gone - we had your party today! It was 80+ degrees and breezy (perfect).Lots of friends and family came to help celebrate. We are so blessed right now with the best people in the world for family and friends. I know grandpa Roy is smiling down today - I miss him so much. You would love him - and every time you sneeze you remind me of him. Its really funny that a sneeze is something you do like him but - he always sneezed a certain way (no way to describe it, unless you could hear it). I LOVE YOU with all my heart sweet girl. This year has for sure been a lot calmer and more stable. Only one surgery and it was planned so you could have the opportunity to hear the WORLD. Amazingly you now can - you still amaze me in so many ways. Although you may not be a talker yet - I know that once you do - your going to have a lot to say! I am looking forward to more exciting changes for this next year with you. Learning to walk and talk maybe?? All I know is that everyday I thank god for you and where we are today. Love you so much tootie :) Also thank you for keeping our deal and spending your birthday at home with friends and family this year. Love you so much - Mommy

Almost 2!

This time last year I was living in a hospital room with Mallie - I can't believe it - that its been a whole year already. Mallie has come so far since then. She was not sitting up, drinking from a sippy cup, eating real food, HEARING!!! So much she has done with herself in the last year. She is understanding more and more words as the days pass by. Still not making very many different noises or sounds yet. I have to tell myself that she has only been able to hear for almost 6 months now. Most normal 6 month olds are not talking yet. Essentially she had to start from scratch when we were activated. It will come!!! The fact that she understands words and turns her head when we call her name is absolutely AMAZING! One thing we were told is that she may not be able to enjoy music as some implant users never can distinguish the sounds that make it up. Mallie knows the difference - when there is music playing she will sway her head from side to side or clap her hands like patty cake. She knows that talking and music are not the same. Another amazing thing! We had an appt two weeks ago almost for her GI issues and basically were told to up her Miralax on the days that she does not go.....she just has slow gut motility and with that she may get constipated. Her audiologist appt went great again. She still was not as spot on with responding to sound on her right side. So we bumped her right side up a bit to see it that will help. As for her left she is responding beautifully. We go back in a couple months. We do have an Endo appt coming up along with a genetic dr. I am hoping to get some more help and or insight on her syndrome, maybe replacing her neuro peds dr as I have never been a big fan of her. The endo appt is going to deal with her growth. I don't know what to really expect from that appt yet, but I am sure we will be talking about growth hormones and such. Mallie is going to be TWO on saturday! We are having a party on her birthday - oh sweet it is to be doing that on her actual birthday. I feel that this year is a huge milestone as we have managed to stay out of the hospital and we will be home not in GR this year. I can't complain about this year too much as I feel blessed to be where we are today. I am looking forward to getting Mallie mobile this year - either crawling or walking. She is still pretty weak in the legs and I know we have caused some of it as we tend to have a habit of just getting her things when she points. I try to work on the leg strength everyday somehow. She is getting stronger in her core - she will bend in half and push up on her own. She is getting closer to pulling up on stuff too. Just need a bit more weight on her :) She is just shy of 14 pounds lately which is still a tiny little peanut. This makes everything harder for her...... I know in time its all going to come and everyone says be happy to not chase her around yet. Oh but I am ready to chase her around and move on - she is a toddler :) Even if she only looks like a 6 month old. I do have a video of her learning to blow on her recorder...I am hoping to post it - so cute :)