Spring is here

Howdy to All - So lots to report - Mallie is learning new words every day!! I need to start writing them all down and will work on that for the next post! I don't know where to begin....we saw the Pedes neuro doc again and she was pleased with Mallie's progress in all aspects...well almost all. Not that we are doing bad but the eating dept is having a hard time with Mallie. She is gaining length which is great but her weight is not increasing along with it. She pretty much still eats like a bird, a very tiny baby bird! She EATs - what she wants and when she wants. Lately she won't even try new things unless its her terms. HUGE crying meltdowns if I even put something on her tray she does not want. We need to get more fat and protein in her diet along with calories. Its so the opposite of my current diet - but thats another story :) So I have been trying to sneak in little extra things with her food. Like flax or safflower oil into her yogurt. Butter or oil into her ketchup she dips EVERYTHING in :) She does like sunflower seeds and started to eat granola bars. So we are taking baby steps in the right direction but at the end of the day (most days) I don't know if its enough. we are still on the feeding schedule of every 3 hours. usually 3 of the feeds is offering her hi cal formula. I hate that she still has to have that but it does pack alot in. Also been trying to get her off the BOTTLE - (I know she is almost 3) but damn it she just won't drink the full amount of milk from her sippee cup. I think she associates the sippee with SIPS! Weird huh? Not really - so really only because she throws a fit in the morning she gets a bottle then. At 3 she gets milk in sippee and before bed I offer it to her too. I know most parents read this and say well then she can go without - the problem is we can't afford for her to go without and with her eating all the time - I also fear Mallie does not know what "hungry" is. It is such a fine line with her and she has that 2 yr old attitude when she wants it to show too! She will eat chix nuggets and hot dogs but not everyday. Like anyone else we need variety but she is not a fan of trying new things either :( We have tried fish stix and other forms of protein and not a big fan yet. I know we need to keep trying because part of the food thing is her age. they say kids need to try foods several times before they actually Like them. So we plug on and I hope its just a phase. If we let her she would live off of puffs and yogurt :) On to her hearing and speech! We had a one year evaluation with spectrum health speech pathologist and they were very pleased with Mallie's progress! According to the assessment they did - here are the following results: Gestures - 24-27 months Play skills - 24-27 months Language understanding - 21-24 months Language Expression (Talking) 15-18 almost 18-21 Months Mallie's hearing age at this test is just shy of 13 months. So she is doing pretty damn good since being introduced to the world of sound last April. We were very happy with the results and reassured that everyone's hard work is paying off. With a big thanks to Mallie's hearing and speech therapist CATHY GREGORSKI. She has helped us get to where we are today! Looking forward to seeing what the next few months bring!! We also had a audiologist follow up and they hooked up her processors again to double check everything. Looks like a couple of the electrodes on the right ear are not working for some reason. There are 22 all together so if a couple are not working - it is really not a huge deal. In my mind I don't like the fact that this happened and I wonder why. I also hope it does not keep happening. She just turned them off so they would not cause any issues. Which a month or so ago - there were a couple times Mallie cried and took her processor off. It was short lived both times and within a couple days of each other. The audiologist says that its possible thats when it occurred because they can make weird or unpleasant sounds should they not work correctly or be interrupted. I will try not to focus on this but still it bothers me a bit. She said that is why there are 22 electrodes, and they will just keep an eye to make sure everything stays the same. I forgot to ask if its possible they can start working again... we go back in Sept for a follow up - will make note to ask them. In the mean time I pray the rest keep on working good :) We just got done with a round of antibiotics for an ear infection - her second one ever. Thank goodness the warm weather is upon us - I hate cold and flu season. We have had a very quiet winter as far as sickness - just the way I like it. Mallie is really into Minnie Mouse - its so cute she calls her Mimi. Next to Macie or Mae Mae as she calls her - I think its her favorite. Also she loves loves loves books. We read something everyday - she usually picks. Or she loves to look at pictures and immitate the animals sounds or movements. Its a fun game! Still scooting all over the place. we are trying to get her to stand up - but some days she does not want to. Other days she does great and wanting to stand. I am ready for Mallie to make that next step in her development but I am afraid her weight is playing a big role in it as well. Gotta get her stronger and keep working with her. We keep saying it has to be on her terms and that is the plain truth. Not sure where the stubbornness comes from? Will get that list of words together and post soon - Happy Spring!!

Mallie's words

Its a great Spring day here in our neck of the woods - a little chilly but still warmer than normal. The sun was shining bright today too! Wanted to update on Mallie's words so far. She is really vocalizing so much lately. Not quite one year since she had them activated - April is right around the corner tho. So far she says with great clarity.......
May May (macie)
Mama
NoNo
Uh oh
ish (fish)
oh no
Hi
nose
eye
Up

I hope I have not missed any words :) She also has quite a few others that are not quite perfect yet but we know what they mean.

She makes the sylables for alot of words like Thank you, baby, please. Plus she signs for a few things - like when she wants more of something. I can't say enough of how this decision has been the best thing for her. I was just saying tonite I can't even imagine and don't want to know - what it would be like if we had not done the cochlear Implants. Its been a long road and I know we are not done yet - but it has been worth it beyond what I could have ever imagined for her. We are truly blessed - Mallie brightens up everything! She is also continuing to get stronger and stronger. She will try to take steps now when you hold her up by her hands. A little unsteady but its a start. We are pushing the 9-12 month mark on clothes finally - almost out of Baby clothes forever! Gonna post some pics below - talk to everyone soon.....

Almost 1 yr Post Implant Surgery

I can't believe how quick time flies - I know we all say it - but it really is sooo true. In a couple weeks will be the 1 yr anniversary of Mallie's Cochlear Implant surgery. One of the best things we could have ever done for our little peanut. In the last month Mallie has really started to try and say words. It is the most heartwarming and amazing thing to witness. The first few months were rough as we went thru patches of her not wanting them on and trying to tweak her programs just so. It is so hard to know when she can't tell you what she hears. In the last 6 months the sound booth tests have proven she can hear very well. She has been a sponge for the last year - learning what sound is and what to listen for - just like a newborn does after they arrive. So even though she is gonna be three this year - she has an adjusted hearing age of a one year old. I have to admit at times because she would not make new sounds for the longest time...it could get a little discouraging. I know not just for me but Cathy G (her speech therapist) and all others who were witnessing this miracle of technology. Somedays I would think is she ever gonna try to make new sounds, or ever gonna talk? Well all that changed a few weeks ago when she said UH OH. Since then she has been starting to really "babble" and just this week she added "May May" to her vocab and "ieieio". She also says "ish" for fish. EEEEE for please. she can bark like a dog, meow for a cat, make elephant gesteres and noises, she does very well with animals. The most amazing thing is how well she understands words and what you say to her. Even if she is not speaking directly or clearly now - she understands so much. She also incorporates some signs in with her communication skills. It really is freakin amazing!!! I know she is deaf and always will be, but this technology is allowing her to communicate so much more to the world and for that I thank GOD everyday. It is not enough for her to struggle with being so little for her age - at least this ONE thing helps her be more in tune with our crazy world. As for her size - we have been giving HG hormone shots now for 6 months and the endocrinolgist is very happy with it so far. She is still obviously not on the charts but so much with her muscles and for sure her size is improving. She is in 6-9 month clothes right now but I anticipate the 12 month stuff to start working by summer. GH is not a miracle or quick fix - she will need to take it for a long time and the hopes is to get her caught up to her age group. I am most happy with how its helped her physically - she is scooting all over the place and she does it very well. Also she is getting closer to crawling (not sure if she will) but she gets in the position pretty good. Also her leg strength was non existent and she can stand for short bursts on her own as well as stand up from a sitting position with some height under her. All in all she is doing so great and I could not be happier for her at this moment. I also can wait to see what the next month brings.

First Word!!!!

Saturday January 20th - Mallie said "uh oh" - this is so exciting for her and us :) It means more words to come - we have been waiting for this day to come and it finally has :) I was straightening up the living room when I first heard her say it. I could not get her to repeat it for the life of me :) She had dropped her paper she was coloring on, to the floor - so she even said in context! I thought it was a fluke because she would not say it again......I told a few friends that day I thought she said it...but was not sure. Then later in the day while I was changing her diaper she threw one of the wipes across her body and she said it AGAIN!!! I heard her plain as day - and was so happy and excited. I kept trying to get her to repeat and she would.... a few times :) Do you think I could get her to do it on video - of course not.....but stay tuned because I will get it :) She since keeps saying it here and there - so I have to say its official that her first word or words is "uh oh". Along with her doggie imatation - she does a cute doggie bark too!

Monthly Mallie Update

Happy Saturday everyone - it seems to be a trend that I update this once a month:) Since December - Mallie is really starting to flourish in all aspects. She can now sit up on her own - she did this for the first time at Amber's house. Amber went to wake get her from her nap and she was sitting up in the pack in play - arms wide open and a big smile. That a girl! Now she does it all the time even in her own crib! Which is awesome but she is a little more stubborn when it comes to naps now. If she can sit up she thinks its still play time, haha! I am hoping to attach a video of her at the end of this post. She is learning to recognize more and more words too. She can make the doggie noise for dog and will mimick mmmm or a high pitch thing that the only way to understand is to hear us do it;) She scoots EVERYWHERE too. starting to get up on her knees a touch - so she may be a crawler yet. Christmas was good - Mallie made out very well with lots of new toys. we need a bigger house to accommodate all her stuff! Some other random things - Mallie loves her Fresh Beat show. Its a show with 4 kids in a band that sing and dance - she absolutely loves it. We watch it everyday. She also is starting to like us reading to her instead of just flipping the book pages as fast as we can. Before her being able to hear that is all she really did was look at the pictures but now she can hear - she wants to know what everything is. It truly is amazing. Steve and I were just saying today - sometimes when Mallie falls backwards on us or wants to hug and cuddle her Implants fall off. We commented on how annoying it must be for her to constantly have to put them back on. But the alternative would be that she stay in the deaf world completely - so in retrospect its really small and petty. A minor thing in the big picture. I don't regret getting that done one bit. she was so happy before - but now she is such a little comedian and so much more outgoing. It has positively impacted her more than we can ever imagine! The growth hormone must be contributing a bit to the fact she is scooting everywhere and sitting up. I mean I always knew it would come but it seems to be coming more quickly than the normal pattern. They say it can help muscle mass and I think it is. One thing its not doing is making her eat more - that area seems the same to me. Still a stubborn picky eater - who would prefer puffs and yogurt over anything else or anything new. We are still working on that tho - she does seem to be more willing try things. We have her second dentist appt this month and then in the next few months we have quite a few visits to GR to make. Feb we go to endo to see how well the gh is helping her growth. We have ear follow ups, GI, Eyes and speech eval. So lots to do and lots coming up. We finally got some snow that looks as tho it may stay a bit. Been a mild winter so far - just the way I like it :) When Mallie wakes up today - we go outside for a bit and try out her new snow pants! Happy New Year everyone!

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!