Thoughts of randomness along with an update :)

December already - whoa!!! Time is flying by as another year is coming to an end. We are at just over a couple months now with the GH shots and Steve and I think they are working! She looks bigger to us - which for us to notice is kinda big because we see her everyday. She is finally transitioning into 6-9 month clothes the 6 month pants are way too short. Although she is still tiny she is getting longer - which the GH will effect - not so much her weight but overall height. As for the appetite getting better - I have seen no improvement there she still eats like a little birdy and is particular on what and when she will eat. This past week we switched from daycare to one of my best friends watching Mallie. Mallie now spends her days T-F with Amber and Avery. I have such great feelings about this as Avery is younger by a year but they will learn so much from each other. Mallie tends to eat better because Avery is eating it....so then she wants too, etc. Plus Avery is crawling and walking and Mallie just so much wants to be like her friends. (haha) I can't wait to see how much she learns from Avery and how much she changes :) Thank you to Amber for taking care of Mallie - love ya girl!!! I felt so horrible for having to leave Janet's - she has been thru almost everything I have had to with little Mallie - so she understands exactly how hard it was to get her to eat and worry every time Mallie would skip a day of poo. I literally felt like I was breaking up with someone! I know in my heart Mallie needs this move tho just for the interaction with someone closer to her age. To Janet if your reading this - Mallie and I love you dearly and want to thank you so much for the last 2 and half years :) We will visit soon :) Mallorie is scooting pretty much all over (backwards) its so cute. she does try to go forward too - she is so close to getting that down and watch out - she will be into everything. She really wants to see and touch everything now. she points at everything and shakes her head yes when you ask her - is this what you want? This book? SHE LOVES to brush her teeth too. Every night she gets done with her bottle and points to her teeth! When you say are you ready to brush your teeth - she gets all excited and shakes her head yes. Still no real speech sounds yet...but she for sure understands words. some that I know for sure are: Macie, shoes, teeth, nose, drink, dance, feet, kissy (kiss), bye, uh oh, where it go, done, NO, yes...and I know there are more. And to think that a year ago the surgeon was questioning her ability to benefit from these because of her white matter loss. I know her read her chart and was like hmmmm??? but if you spend 30 seconds with her you know she is one smart little cookie. We had an appt with him this past week and he was very impressed with Mallie :) I love proving them wrong - It goes to show that sometimes you have to throw out the medical books for a second and look at what is really going on! I am excited for Christmas this year as I know Mallie will love ripping paper off her gifts. We got her the leap pad which I am still questioning if she is too young for - I know she will grow into it so it will be worth it :) Most of the games are for 4-8yr olds. Christmas cards are on there way here so I can get those out this week hopefully. gonna try making some treats this year to give out to family and friends. Everyone is healthy and happy at the moment so life is good! I hope everyone has a great holiday season and a splendid New year to come! I am gonna post some pictures from our family session this fall. Ashley Folkema took these and I LOVE THEM. her website is http://www.ashleyfolkemaphotography.com - check her out.

Growth Hormone Update

So its been just over two weeks since I started giving Mallie the GH shots. So far she still cries - each time but is quick to recover. Its is soo quick its done and over before she realizes it. So I guess you could say its a bit easier on me now that I have been doing this for a couple weeks. I still feel bad for the poke. So the big question is - have I noticed anything? Well not exactly yet. No appetite increase or super muscles yet.....I think she is teething so her appetite has been pretty low compared to before. so I can't really judge it yet. We will keep at it and go back in FEB to the endocrinologist to see if its making progress. I would think in the next month or two if she starts to grow out of things...that may be an indicator, haha! Only time is gonna tell. SHE IS 2 and boy lately she is acting the part! I think she tried to throw a tantrum the other day - what are those? It was so unlike her and she was mad! I don't even remember what it was about but she was whining and flailing about. She even whipped her implants off her head as fast as she could - as if to say THERE! Take that! She is still not making much progress on different sounds. But learning to understand more and more words every day. She also is very good at tuning me out when she wants to and that is will the implants still stuck to her head. She is still a little ham and GOD love her more every day! She is so funny at times and she knows how to play up her cuteness :) We are in trouble in a few years - and when she starts to talk - OH BOY!

GH days one and two

So yesterday we had the endo Nurse come from GR to show ME how to give Mallie the GH shots. I have to say it went better than I thought. She cried but only after it was all over with. She gets over that kind of thing really quick too :) Now the nurse and Steve were both here with me yesterday. Tonite I had to do it all by my lonesome......it still went pretty quick but Mallie knew what was coming and started crying - I still managed to get it done. I have a feeling that the next few days won't go as easy. She is going to know it is coming..... They say it gets easier the more days we do it. I know its only day 2 but I am thinking it gets worse before it gets better. The Nurse told me yesterday that sometimes after a couple weeks - people notice things, like eating more etc... and some are alot more gradual. There is no way to know - which direction this is going to go. so we will see :) Tomorrow is friday thank God - this week is kicking my butt!

Mallie is really getting close to being on her hands and knees - she really stretches out to grab stuff and kinda goes up on her legs. She will stand for a long time too - it you hold her hands or let her hold on to you :) She looks so cute standing because she is soooo little! It will be amazing when she starts walking, hehe! Well thats all I got for today - will be back with another post soon :)

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 :)

Long time, No blog.....

Well so far this summer has been crazy busy and keep saying I need to update the blog....so excuse the novel I am about to write :) I don't even know where to begin....since my last post so much has happened. We are in the 4th month now of Mallie being able to HEAR! She is doing great, she is comprehending lots of words, still no speech from her yet. That is normal tho, I guess. As she technically has the hearing a of a 4 month old. She does make a lot of noise and chatter tho, she just has not gone into the realm of other babbling yet. I know she understands words, like bye, kiss, hello, Macie, Up. Just to name a few. She almost always shows a response to us saying these words. She still thinks that "NO" means for her to take her implants off, haha! Every time she does it we say no, so she is associating the word no with her action that she created. We are working on that one:) She is getting stronger little by little and gaining bits of weight little by little. it was several weeks ago now but at her last dr appt - she was 13lb 6oz and that was the GR scale. (which is always less than Dr Leikert's). She also had the flu a few days before so who knows. She keeps feeling heavier to me :) Speaking of the last dr visit - it was in GR with the neuro developmental pediatrician. I have never been a fan of this office and as usual not too impressed. Mallie has a syndrome which makes her grow slowly - what part of that don't they get. She is not underweight for her length - she looks good! and its been a hell of hard road to get to where we are today. They never seemed to impressed with anything and just want to dump her full of high fat, high sugar crap! Also they want me to feed her super high cal formula 5 times a day still. I am seriously thinking of never going back there. They don't seem to interested in learning more about her condition but more like treating her like a preterm low birth weight child. The thing is - no matter how much food we dump in her - she will not GROW any faster....she will just get FAT! We don't want her to be fat, but healthy. I think we are doing just fine in that dept for now. One of the most important things is to treat her, her age not her size. Its so hard for people to do that because she still is the size of a sixth month old. Well her brain is almost 2 and in order for her to progress and move on developmentally - we have to stop treating her like a baby in some ways. Like the 5 bottles a day. She eats every three hours still but its food. Only 2 bottles a day - first thing in the AM and before she goes to bed. She also started finally drinking from a sippee cup - YAY!!! She is not a pro yet - but she is doing it. How many cups and how many days did we fight and we finally had a break thru!! We also had our first dentist appt with Dr. Martin at Lakewinds dental. He was great with Mallie and of course Auntie Jen was our assistant!! Here is a photo of her in the chair after the appt.

It was a meet N greet with some info on caring for her teeth right now. We brush Mallie's teeth every morning and at night. I usually brush them first than she does it. She is getting better with that too. we started using flouride toothpaste - bubblegum flavored. Just a dab on the brush to help polish all those little teeth. We go back in 6 months to see if she can tolerate a cleaning.

She has been scooting on the floor, mostly in a circle but she can move a bit - I will be doing dishes and find her a foot and half from the toybox. She tried to crawl a few times, but she is still lacking in head strength and she just can't quite do it yet. So close! Actually today when I let her roll around before bed - I watched her pick her head up off the ground a good inch and a half!! I was amazed - went to get the camera and she would not do it again.... little stinker:)

We got to go to the fair this year and she got to see animals and ride the carousel with Grandma Mary - she was not too thrilled but did not cry either. We got our picture with a baby white tiger. Grandma Tana was in that with us - she got to hold the bottle:) Here are a few pics....

So all in all summer has been good to us so far. I feel more normal this year with life. Maybe not normal but things seem a bit easier. We still have dr appts and OT, Speech, etc.. but I feel like we don't have to stay at home - Its easier to take her places now. We know where we stand with her weight, health, etc....so we can plan stuff again. I know the road is far from over and will have lots of challenges, bumps, you name it. But for now I am content! coming up we get to meet with a pediatric GI dr and an ophthalmologist. We see the GI doc and the audiologist at the end of aug. Then I need to schedule her endo appt soon before she is two. We have quite a bit of things coming up but all are going to be good and informative!! Well thats all for now - I know I have missed something.... I will try to post weekly updates from now on - so I can document all the great things and funny stories! Love to all - Steph