A letter to Mallie on her 3rd Birthday

Hi Mallie - Tomorrow you will be 3 years old, where has the time gone already? Life really does move so fast. You are forever changing and growing up! You said your first word "uh oh" in January and you have not looked back. The CI's are truly an amazing gift that we are so glad to have them for you. More and more words are coming with great success! I wanted to tell you how beautiful you are and how happy you make me each and every day. I am blessed as a mommy to have you as my daughter. I am also, so very proud of everything you have accomplished this year and I am looking forward to where you will take us next. You still light up every room and capture everyone's attention with your sparkly personality. its truly amazing and I love you so much. Happy Birthday Mallie - Love Mommy

Tubes surgery

Today we woke up at 4am to head to GR for a 6:30am arrival - 7:30 surgery time for Mallie to get her tubes put in her ears. Both Steve and I had flashbacks up getting up to Milk cows and remembered how getting up that early really sucks!! Been a long day for all of us. Out of all the surgerys she has had this one was by far the quickest and easiest. However, it did take longer than expected - Go Figure! The Dr came out and said the tube were in but it took longer because the fluid in there was like CEMENT. That sounds awesome, right? So he took a little extra time to clean them out as best as he could. Then put the tubes in....in the next breath he said that since the fluid was so thick and packed in there that part of the inside of her ear is calcified - I was so tired that I can't remember exactly what he said but we go back in a couple weeks and by then I will be drilling him again with more questions. HE said this kind of thing can be very problem-matic with kids and CI's. Any kid for that matter as the calcification would mean on a normal hearing child - they permanently damaged the inside of her ear. I try to look at the brightside meaning that she does not use that part to hear anyways but I am still mad that this happened. I feel a little bit like its my fault - I mean how long has it been in there? She had an ear infection in the spring that she was treated for and cleared. Then in June when we followed up with her CI dr he said there was still fluid in there - so another round of antibiotics. When we followed up with him again she still had it - which is why we went down today. Another great thing is that these tubes could fall out in a few months and she will need to have them put back in again - he said multiple times - ugh! He also spouted off that kids with this kind of fluid have an allergy or something and will need to follow up with our Dr here and talk about an antihistamine of some kind. He also threw out asthma as something to go along with it. Mallie is not super physically active yet for me to know if she has that....And Really? Does she need anything else to deal with. I already felt bad enough that the fluid in her ear damaged her already non working hearing parts - I suppose I should not beat myself up about it. Its very hard because it could have been prevented I think. The only thing that sucks is this type of fluid also does not always turn to a reg ear infection and because there is no pain - she never complained. OH and because she is DEAF - its not like it affected her hearing. A hearing child would have only resembled a deaf child with really thick fluid. So again I should not be overly hard on myself - but the next thing I am going to roll into makes me feel even worse. So after that little conversation - he asked if her adenoids were removed? No they have not been yet - but that will be the next thing.... her tonsils looked a bit swollen at her last check up but we thought she may have the start of cold coming on. I had my tonsils and adenoids removed when I was 5 so this does not surprise me. That was also my first and almost last surgery. Mallie has had 5 already and she is not 3 yet. So this will be another surgery.....Which I think will be good in the long run but sucks we could not have done all at once. Hell, by the time that is scheduled she will probably need tubes back in those ears again so whatever, right? I mentioned that she sleeps with her mouth open ALOT - and this is where I feel like I failed a bit after researching this. The mouth breathing has caused her gums to be irritated a bit and her lips are always dry. Plus it can cause her jaw to form in a different manner - teeth crowding - restless sleep - possibly sleep apnea. Which I don't know if she has because she does not snore. She is restless sleeper - which can make them more tired during the day -which explains why she still takes a 4 hour nap most days. I don't know how long the mouth breathing at night has been goin on but awhile and feel like I should have said something sooner. I guess I just thought it was her. What I am hoping for is removing the tonsils and adenoids - then the fluid, mouth breathing will correct itself. I just have a feeling he will go in there and something else will be wrong and he won't be able to do it or he will notice something else not quite right that we have to watch or monitor. I have been trying to stay on the most normal path with Mallie - since the first year and half was so rough. It has been really great to stride towards everyday normal toddler activities and development. Also this stuff is really so minor in comparison to what she has been thru already. I just want to have a normal childhood for her - one not spent on testing and dr appts. The last year since having her implants has been as normal as could be I guess - i am just ranting as it always leads to something else with her. I feel bad for her and its frustrating for us. Also remember me talking about her tantrums - they disappeared after I lowered her dosage back on the GH - but they slowly creeped back in. In the last 2 days she has had 3 of them. They are not pretty and disturb me as I don't know what to do . I don't know if its her being frustrated to communicate - sometimes they are for no good reason. I think when she is tired that does not help but so far I don't know how to pinpoint it before it happens. I know I will be fine but tonite I feel like a bad mom and I am little frustrated again. Tomorrow I will make the calls and line up the apts again and we will push forward like always. Things will be ok - I just need a good nights sleep and typing this out made me feel a smidge better :)

Mallie's....a new way to say things. Everything is hers!

Last week Mallie started saying Mallie's before almost every word she said. You know because everything is hers, haha. It is so cute how she says it. Mallie's momma or Mallie's daddy. Mallie's baby, Mallie's milk. Mallie's chair...the list goes on and on..... Everything!!! I LOVE IT! So we are at 3 weeks on the old dose of GH and she has been GREAT! No tantrums - just normal 2 year old whining (we are working on that). Part of the whining comes when she knows what she wants but can't say it yet. She tries really hard to repeat everything...still missing the D, P, B vowel sounds. She really tries tho and I know its coming! Today is a huge milestone as she finally drinks from a straw! I bought the little Elmo juice boxes (they are Mallie sized)with a short straw. She loved it and I am sooooooo proud of her. This achievement should bring on some more muscle for that little mouth of hers. Which will help her with Speech! Can't wait to send her PT and OT an email in the morning to let them know :) The last 3 weeks we have been beachin it with our friends the Waggener's and the Maiden's. The first week Mallie did pretty good but her floatie was not the greatest at holding her secure. I ordered her a new fish -and the second week she did awesome in it. This week however the waves were decent sized and she did not fancy that. She was content to sit in her beach chair and eat Cheetos with Livy. While we sat and watched the "bathing beauties" hang out in the water. That is what Andrea nicknamed the boys. I think it fits perfectly - they literally take their beers and go stand in the water the whole time, haha! Afterwards we cooked out and I have to say watch out when Mallie starts to walk. She is starting to defend herself a bit...as I watched her in her "occupier" (that's what Steve calls it.) Its basically a excersaucer but the seat is on the outside of the activities. She can stand and push herself around the toy. She does really good in there now - I brought it out for her to stand in and the kids all played around it. She was pushing the other kids out of the way (well trying to). I was actually impressed that she wanted to move them out of the way to keep going. She was not being mean or anything but it was a proud momma moment because normally she would just sit there and let the kids push her around. Aunt Misty was here for the weekend - got some sister time in and it was great! I sure miss all my sisters and think they should all move closer, wink wink! She comes back in a couple weeks and can't wait to hit the beach with the kids and hopefully have a little vacation. Then my other Sis Lisa is having her baby shower at the end of Aug - can't wait to see that Lil first time momma. Aunt Dawnie - Mallie is in need of some Auntie time :) The summer is flying by....and for all those who read the paper a week ago, lets give a hand to Garrett, the daily news intern, for writing such a great story. Steve and I could not be happier with how it was written. That boy is going to go places! I hope everyone who did read it enjoyed it and learned a little more about Mallie's implants. They have been one of the best things we could have done for her! Ok well it is way passed my bed time again...I keep saying I am going to go to bed early....we are taking Mallie to the fair this week! Will have some pics and updates soon on her second fair experience - Night all

Summer 2012

Hey All - I know I think I say this every time - it has been awhile. Life sure is busy. Let's see where to start...hmmmm? Since my last post we had a follow up with the CI surgeon and the Endocrinology Dr. Mallie was 17.4lbs and 29.5 inches long on June 13Th. All very good - the dr upped her dosage of GH (growth hormone) from .3 to .4. She was very happy with her growth and even commented on how much taller she looks! All was good there....second appt of the day was the ENT doc and he was pleased with Mallie's speech and her development in the hearing world. She had an ear infection a couple weeks before the appt so he decided to give her a good cleaning and see if there was still fluid in there. There of course was still fluid in there so another round of stronger antibiotics was given to us and we were to follow up in a few weeks. So we started a bigger dose of GH and an antibiotic on the same day. We had been noticing some behavior changes in Mallie and could not really tell if the antibiotic was giving her an upset tummy or she was just getting started in her terrible twos. She started getting whiny all the time and has even had a few MAJOR meltdowns. I mean major and over what? I have no idea - the first time she threw a tantrum I chalked it up to being really over tired. Well it happened again out of nowhere after she woke up one morning. I called and spoke with the Endo doc to see if the Hormones could possibly cause something to make her so irritable and we both agreed the antibiotic could be causing some discomfort and the change in mood. We voted to wait and see once she finished that up so we can rule it out. Well we finished the meds and low and behold she has still been super crabby and whiny with 2 more tantrums over nothing. I don't even recognize her when she acts that way - it is so weird and WAY out of character. I know that all kids throw tantrums and whine but it was just hard to believe that overnight she could be that way. I decided to contact some other RSS kiddos moms on my Facebook group and see if they had any insight. What I learned is a few had issues with behavior while on GH. Now Mallie has been on it since last October with no changes in behavior that drastic. My gut told me the increased dosage was causing her to act this way. I have now for a week straight given her the old dose amount and she has been alot better. Still some whining but mostly our happy little Mallie. Steve and I agreed to try it for two weeks so one more to go for an official verdict. I know I should call the doc too and let her know what I did - it may be the other dose is just too much for her. I think too there is no reason to up the dose if she is doing good on the other. From what I have read the dosages range from .3 to .6 - so an increase to .4 is quite a bit. I will call them next week and let them know after I have made sure this is the problem. Even beyond the behavior issues she is still excelling in both her physical strength and her vocabulary. She literally tries to repeat everything - which is awesome!! She now pushes up from her feet and lifts her tiny bum up in the air. Its her version of standing up! The fact that she wants to do it is great because we have struggled with her wanting to put weight on those little feet and legs. Its a huge step for her. Our PT also let us borrow the gait trainer for Mallie to walk around in over the summer in between visits. Had the follow up yesterday with the ENT doc and of course she still has fluid in her ears - which means gotta get tubes in those ears. The outpatient surgery is set for Aug 6th - and should be no big deal at all. Kind of expected with Mallie I guess - better to get it done now before cold and flu season tho. Well that is all for now - but my goal is to update once a week from here forward. I know that by slacking I miss out on lots of fun things to report too! Hope everyone is having a great summer!

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.