(~~~Here's my brief MoD pitch~~~~ I am going to put a link on my blog to their website as soon as I get the time to work on my blog layout. I am currently working to raise funds for this year's March 4 Babies campaign. Our march is on April 12th so if anyone is in the High Desert of southern California area or can be and would like to walk with us, I will post the link at the bottom of this post so you can register to walk with us. It's totally free to participate and you do not have to make any donations, but if you would like to, you can also do so through the same link. All donations are tax deductible and we would appreciate every dollar you would be willing to donate. You can also share this link with family, friends or businesses to donate as well! Ok......so I will end the March of Dimes stuff there :)~~~)
The twins will be starting school this fall and even though it is still 7 months away, I am getting so anxious and nervous about it. They have never been with anyone but family for even a minute so I'm kinda freaking out about the whole idea but...I guess it's a bridge everyone has to cross at some point, unless you homeschool I guess, but that is not a practical option for us right now so across that bridge we shall go! It is kinda fun shopping for their school supplies. Yes, we are already stocking up on them 7 months early but only because I wanna make sure the stores don't sell out of what they want...like the Angry Birds back pack and lunch box Nicholas HAS to have! Or the My Little Pony one that Aubree won't be happy without! Purple pencil boxes will NOT do, it MUST be the pink one and I can't risk them selling out and her not having the pink one her very first year of school! Luckily, the school we will put them in has uniforms so I don't have to be too worried about a different outfit every day for a month (whew!) but I do have to get started on making all the fabulous hair bows and scarves to dress up that bland ole uniform and help her to stand out. Not that she really even needs my help, after all, she IS the darn'd cutest little 5 year old in the world! ;) But you know, gotta get started off on the right foot. Nicholas will bust through the doors and make his own first impression because that boy is a big personality nut! But my Aubree is much quieter and shy at first. ah! Thank You Jesus for making them twins because the best thing to help ease my mind is knowing that they will be in this together. He can look after her and she can take care of him. Not that I won't cry probably every day for the first year, but I will know that they are at least together if they are not with me.
Okay, so that is the twins' update, Annabelle really doesn't have much of an update beyond the fact that she is just more adorable every day! Still gives people the stink eye if they even glance her direction, still judgmental as ever :) but also still the sweetest, kissiest and cuddliest little girl ever! Oh! Actually, there is a little update. She now is an allergy kid! haha! like I am excited about that or something???? :) She's highly allergic to a lot of things so now has an inhaler and meds to take along everywhere we go. Anyone who has experience with this, please feel free to comment or email me with any ideas or the best advice for this situation as I am very new to it. :( The saddest part is that she is my ONLY child who absolutely LOVES cats and dogs, and she is the ONLY one who is deathly allergic to them. Cruel irony right? But it does give us an easy excuse not to get a pet even when she begs for one. It's so adorable too when we are at costco walking around and people are offering food samples, she's already learned that she can't eat a lot of things so while she used to always ask for a bite of the samples, now she sees a sample and says, "mommy, am I 'lergic to that?". It's sad that she has to ask that first but it is also so addictingly adorable to hear her say it! :)
Now, for the big update, the Man of Steel himself, Jaxon! I started calling him the man of steel because with his home therapy we had been working on teaching him to sit up. A baby is supposed to put their weight on their side and push up from their arm to sit but he was doing it wrong. He was laying flat and used his stomach muscles to pull himself straight up like an ab crunch. Of course, he can't do it fully but he would get so close that me and his teacher joked he has abs of steel and that ended up translating into him being the Man of Steel, but it fits. So now I am all about superman stuff for him (which was good because with the movie just coming out last year, there are lots of superman products now) Ok, ok, so for the real updates. :) So, I see October was my last post so I am going to assume I have updated up until that point. Well, his motor development finally started catching up! He is now developmentally caught up to his ADJUSTED age. (which means, he is 13 months old, but since he was 3 months early, he is 10 months old ADJUSTED, so with his motor skills developmentally, he is at a 10 month level). This is great as he was previously further behind than that! He started rolling just before his first birthday and he started sitting up shortly after he turned 13 months (like a week ago). He still does not crawl or stand but we are working on that. Crawling mostly as it is more important than standing for now.
The big thing we are more focused on though is his speech. I know, I know, you want to say "he's only 13 months so speech doesn't matter" but please don't say those comments. In the nicest way possible, I just want to let everyone know that it is actually rude and a bit offensive to tell any mother what she should or should not be concerned about. The mother is the one directly involved in every step of the process and getting the full scope of information about her own baby's situation and although she may share information with you, I GUARANTEE she has not told you every single piece of information. If she feels there is a need for concern or for intervention for her baby, then she is the one who knows better than ANYONE else! Even more than the doctors. Jaxon's doctors have always told me, "you will know before anyone (even doctors and therapists) if there is a concern because you are ALWAYS with him while we are only with him once a week/month/etc". I know people may say things like that because they want to ease a concerned mother's mind, but let me tell you, it has never once eased my mind hearing people tell me something that goes against what the doctors, therapists or I think. It has only made me irritated that the person would not understand the fullness of our situation but assume they do. So please, if a mother ever shares a concern with you about her child, just support her concerns and her decision to do whatever she feels she needs to do about it. If she asks you your opinion, then you can answer honestly, but if she is only telling you stuff they are working on, do not offer your advise or comments. Just support her by telling her that you will pray for the little one or even just say "oh ok". Ok, so that was a side note I wanted to make before telling you where Jaxon is with everything.
Ok, so Jaxon! So, a few months ago I noticed his speech was not really developing even like the other preemies in his exact same situation so I mentioned it to his early interventions (EI) teacher so she did a standardized test on him and he scored at a 4 month old level for expressive and receptive language. (to clarify since everyone always wants to make it like it's ridiculous a 10 month old should have speech issues, babies are supposed to start babbling at 4 months old. I get that they all do things in their own time so don't always follow milestone charts, however, the milestone charts are THERE because they are the standard to get an idea when there is a possible issue with something. Just because the baby doesn't follow the standard doesn't mean there is an issue, but it IS a good reference when an issue is suspected) Anyways, he was 10 months old at the time, 7 adjusted, so I mentioned his results to his AMAZING pediatrician so she referred him to speech pathology. The pathologist did another test on him and he scored at a 2 month old level but she said it could be a range score (like 2-4 months) and that was why it was a different level scoring. But it at least showed us that consistently with 2 different testers at 2 different times, he was showing a "significant delay" in his speech. It was severe enough that she decided to refer him to speech therapy as well as audiology. (it's VERY rare to get the referral to do speech therapy before 2 years of age but she thought it was severe enough to start immediately so in a way I was nervous about that but in another way, very excited because I am a STRONG believer in early interventions) Anyways, so speech therapy is now every week and he is a month in and still is not saying any more sounds than he was but he has gotten more vocal (makes sounds more frequently). His therapist said in her 12 years of practice, he is by FAR the youngest she has ever worked with. He also saw an audiologist and found he has low frequency hearing loss but after several appointments (the last one being today) with ENT and audiology, we still have no definite conclusions, but this is the solution they are leaning towards. He definitely has ear canal stenosis which means he has a very narrow ear canal. His left is very narrow but his right is so narrow, she said she has only seen ONE that narrow before ever. It is also misshapen. It was so narrow she had to use the special microscopic otoscope to even see in it and she STILL was unable to see the eardrum. We KNOW that his eardrum has an abnormal rhythm and they initially thought he had fluid but now they are not sure. Because she's unable to view the eardrum, she cannot say for sure but even his tympanogram (ear drum test) was not definitive on that. His left ear, she did not see any fluid so she thinks based on that the right ear would not either, however, BOTH ears showed abnormal eardrum movement but no pressure so they don't really know what's causing the abnormal movement but there is really nothing else they can do for now so it is just waiting. We basically are nowhere on those results but at the same time, we did get SOME information. Because of his abnormal ear canal, it is possible his hearing loss is actually because the sound waves are unable to travel properly through the canal and some sounds are lost. If this is the case, then his hearing is not technically a "loss" because it just fluctuates. (meaning it's randomized. If a jumble of sounds goes in, only a random assortment of them will actually be heard) Hopefully it will get bigger as he grows but she said that's not always the case so she will continue watching him. She said some adults have ear canals the size of a newborn infant because they grow for some people but some people they don't. Nothing really indicates whether his will or not so only time will tell. If it does not get bigger, then there is a possibility she may have to surgically open it up but if she does, she would not even consider that until he's closer to 5-6 years old. ALSO, he has a cyst in his ear canal. She is not immediately concerned about it. There are three things that would make her concerned. 1- it fully closes up the ear canal, 2- it grows, 3-it does not go away. She said it does not fully close the canal right now so we can scratch that off the list so she will just watch it to be sure it does not grow and also that it hopefully will just go away on it's own. I asked how long before she wants it to go away but she said it just depends. Hopefully by his second birthday but if not and it still has't grown, she would probably give it another year as long as it does not grow.
So, beyond the hearing/speech stuff, he is doing amazingly well!! His oxygen has been amazing for 3 months without assistance now and he has had no more problems with his muscle tension. Can't believe he is over a year old already! It's nuts to think how fast his first year flew by!!
So......that is kinda everything going on around here. (in a lot of detail too) :) hope everyone had a wonderful Thanksgiving, Christmas and New Year!!! I am going to put together a list of items every NICU parent needs because lately I have had several friends with nicu babies or friends with nicu babies and they ask me and other nicu moms what are good things to have so I thought I would make a post of some things so I can just direct them to here. If you had a baby in the nicu, what were some things that you would say are "must haves"??? You can email or comment with your answers. Thanks and have a blessed day!!!
Oh! and here is the March of Dimes link to join our team for the walk OR to donate!!
http://www.marchforbabies.org/personal_page.asp?pp=4576339&ct=4&w=6358311&u=DestinyCiera
To check out any previous updates, you can check out previous posts OR for weekly updates, you can visit Jaxon's Facebook page: www.facebook.com/jaxonjeremiahwetzel
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