Transitioning to the sippy cup and other stuff

This is brutal. And it's official, my kids are super spoiled and I'm not helping the situation. I can't stand this weaning. They hate the sippy cup and they want their bottles. They cry and whine and I give in. We are trying a 2 oz bottle in the am with their multi vit and then milk in a sippy during the day (they love milk and I figured this will get them on the sippy to offer milk as opposed to water). Then they get a couple ounces of a bottle for their nap and one for night. They don't want the damn sippy. They'll take some sips and it's like they are unsatisfied. I know what they want and why they are fussy, so I give in.
It also doesn't help that E's teeth have been bothering him. All molars are coming in and Serena has almost both sets of her molars working their way through. Speaking of teeth, they went to the dentist for the first time this week and all was fine. They got fluoride coating on their teeth and we go back next year. Pretty easy. The dentist was the second person to remind me they should be off the bottle by now. I know that, but it's easier said than done people!!!!

Anyway, all else is well. Awaiting the DAFOs for E, hearing more words from Serena, including "gramma", and swimming and hippotherapy this weekend.

Daddy has a fight the 22nd and we're excited. They also aired a documentary (not the main one I talked about) but a local one on Edwin and our family. It came out really nice.

We had a nice visit in Maine, but didn't get to spend nearly enough time with my sis who is a police officer. But she'll be down for the twins' 2nd birthday, which is only 2 months away!!!!

Here are pics from Maine

Orthopedics today!

Well, we had a great visit with our new orthopedist. First we spoke with a resident, (UMass is a teaching hospital). He was SUPER nice and listened very carefully and asked a lot of questions. He closely looked at Edwin, bent his legs, pushed on his feet, etc etc. Then Dr. M came in and listened to my concerns. He said that as far a a dx, because Edwin's low tone has not turned to high tone, as it often does in CP, it might still be too early to get a dx without an MRI, or without a neuro. He said, but we don't need a dx of CP to get AFOs! He said, "Just by looking at Edwin I can tell he will benefit from AFOs and I am all in favor of giving kids AFOs who need them." He said he fully expected Edwin to do much better with the walker once he had the AFOs and said many of his kids who were not walking at E's age, walk only months after getting the AFOs!
So off we went to get a hip x-ray (standard), and get casted for the molds. Edwin did really well, squirmed here and there but didn't cry. We chose the black and red with flames for his DAFOs. THey should be in in 3-4 weeks!
We don't see Dr. M until Aug 28th, but I am going to try and move that up if the DAFOs come in soon.
I am very happy I had the knowledge from other moms to schedule this second opinion with a new orthopedist. I am thankful he listened and had a suggestion, other than the first ortho who said, "He's fine. AFOs won't help; see you in 6 months." So it was a long but very productive visit!
Thanks again to all my fellow AFO moms who helped guide me along, and hopefully will continue to do so.
One piece of advice I'm looking for is specific shoes I should get Edwin once we get the DAFOs. I know I have to wait to get him new shoes until we get them so I can try shoes on him with the DAFOs on. I've also heard Stride Rite is great. Any particular shoes? Do you have a name of the shoe that you really like that work well with the DAFOs?

Thanks all!!!!
We're going to Maine for the weekend to visit family, so I'll post pictures Sunday night/Monday!

Too cute not to post

Pictures from this past weekend at Grammy and Grandpa's. Please read post below about our weekend and Edwin's new therapies.
My sweetheart baby darling.

Talking on the "cell phone" aka a calculator! Gotta love this girl!!!!


I had a blast in the kiddie pool with the kids!


The bubble machine is a huge hit!

Have you ever seen a sweeter little guy? (Other than your own son, grandson, nephew, cousin, etc etc...lol)

Our 2 new therapies! *Edited with more pics and videos*

Well this was a great weekend! On Friday Edwin began aquatic therapy, and Serena participated by swimming during that. Edwin, Sr did most of E's therapy with the PT while I held Serena in the pool who was not impressed even with the 80 degree heated pool. Edwin did awesome! He didn't cry and was in the water for an hour!! The therapy included holding him under his armpits and keeping him vertical. He then has to kick his legs in a running motion. This is great for strength building, and even without the ability to understand us telling him what to do, he did kick and reached out for pool toys and did an amazing job! We are very pleased with this therapy and Daddy brought him again this morning and he did even better.
Here are some pictures after therapy with Daddy and E in the pool. (Daddy wear his t-shirt because he doesn't have a defined enough 6-pack for his liking. He is oh so vain!)



On Saturday we went to hippotherapy. I have to give a huge thank you to my friend Kelly. I would have never found this place if it wasn't for her. Her son does hippotherapy and he is an amazing boy. Kelly told me hippotherapy has been the single most helpful therapy he's had (he started at 18 months and he is 4 now.) So I called and even though at the time I didn't have EI's approval to cover the cost, they had us come in for a trial session. The therapist was AMAZING. I know this will sound funny...but he was like a horse whisperer... for the horse I'm sure, but also for Edwin and I'm sure other kids too. He was so calm and reassuring. E went right to him, allowed him to put on his helmet and put him up on the full-sized horse. I was nervous of course, but it was AMAZING.
It was incredible to watch as Edwin needed a lot of support around his hips at first and after about 20 minutes, E was sitting on the horse without hands on by the therapist!!! He did a 30 minute session and did get tired at times and leaned over to rest on the therapist's shoulder. He hugged E and whispered to him and it was so moving I cried. He never cried once on the horse and kept looking at us proudly an babbling as he came by. I am so proud of my boy, and so thankful to
my friend for helping us make the calls necessary to begin this
therapy!
Serena had fun walking around exploring and playing with the owner's daughter. She didn't seem interested in riding, so I didn't feel guilty!
Here are some pics of E on the horse. They were taken by Daddy's phone because silly me forgot the camera so they are small because I emailed them from Edwin's phone because we can't figure out how to upload them to the computer. So bear with me until August 2nd when he goes again...I'll get better pics then.






After the session I explained to the therapist the difficulty we have been having in getting anyone to truly acknowledge the difficulties E was having, and how he's official dx by the neuro is transient dystonia, although recently others (like NICU follow up team, said they can't rule CP out.) His words, "this is NOT transient dystonia." He explained that E has very low tone in his trunk, and that he over uses his abductors (inner thigh muscles) to compensate. This leads
to him avoiding using his glute muscles which need to be strong to pull to stand, stand, and walk. I said when E pulls to stand...and he finished my sentence...he said, he goes up on both feet simultaneously. EXACTLY. This again avoids using the correct muscles.
He knew so much about the ways E uses his muscles in just 30 minutes and basically gave us a dx, but of course it doesn't count. But it did feel good to know that someone agreed with me that Edwin's motor development is more than just "delayed." It made me upset that he could have been getting better PT for some time now, but I can't focus on that. I told him I had been looking into private PT, because our insurance will cover some of these sessions in addition to EI services. Unfortunately, we have not found anyone who works with young children, because EI is a catch all until age 3 so every local private PT service I called and the rehab center affiliated with our hospital only sees kids after the age of 3. This therapist gave me some places, but all are out that way (30-40 minutes from our home.) But I am going to look into it because Edwin has established some bad habits that we have to work to break, which include doing exercises we have not been told about by our current PT...like his "W" sitting. He has been refusing to circle or long sit for weeks now, however, I kid you not, we went swimming after hippo on Saturday to practice what he did in aquatic therapy Friday and when we go to my moms to visit he was sitting in his little pool on his bum for over 2 minutes!!!! He did it several other times as well!!!
And the great news? I got the word today that EI will be covering the entire cost of hippotherapy for Edwin!!! As you know EI is up until age 3! After that, we'll probably continue and pay for it because it seems so great for him!!!
We feel very blessed that we came upon these two therapies for Edwin and that the generosity of our PT enables Edwin to get therapy for free and EI will be covering the hippotherapy. We are very grateful and looking forward to these extremely fun therapies for E and the fun that Serena has in being included in some ways!!!!

***And Edwin FINALLY learned to wave "bye bye" last week!!!!! It is probably the cutest thing you've ever seen as he waves frantically, very unorganized, and usually with both hands. I have to get it on video.
And Miss Serena is increasing her vocab every day. Yesterday she came over to me with a duck in her hand and said "duck" clear as day. I don't even remember really focusing on teaching her that animal. I was shocked. And her saying "stop it" is still not getting old. She says it about 40 times a day. It's hilarious!!!! Also, when we laugh, she now throws her head back and laughs along with us. It is soooo cute!

Don't mind the nakedness...this is why it's good this blog is private!!!

Our first (and hopefully last) non-respiratory related ER visit!

3 stitches! He was on his plastic little tikes trike sitting watching cartoons. The nurse and I were right there. All of a sudden we see him starting to fall forward over the handle bars. We both dived for him, but itwas too late. Flat on his face onto our hardwood floor. Ugh. He cried right away...screamed actually. The nurse looked at his face and we saw nothing. I took him from her and then saw blood gushing from his chin. "He's bleeding!!!" I screamed. I felt the lump in my throat and held back tears. A closer look after putting the paper towel showed a deep gash. Ugh...time for the ER, he definitely needed stitches.
So off we went, and he was a real trooper. They gave numbing gel and he didn't squirm or cry for the first 2 stitches. The third one he whined and squirmed a bit, but he was so brave. So poor little man has stitches until they are removed Monday.

In good news, check out the video below. He is getting better and better with his walker! Maybe he's getting stronger, or maybe he does better without balls being thrown at his face and mommy and daddy screaming like crazy...lol. Either way, he is one amazing boy.

And here are pictures of our equally amazing and very beautiful girl. She is doing great on just whole milk. And the cutest thing? Her saying "stop it!" lol. That's her new phrase! I have to get it on video!!!

If it's not cerebral palsy, then what 's going on?

The kids are napping so I figured I might have a moment to update you on Edwin and his walker.
Soooo I now know that Edwin has more motor issues than even I realized previously. I can't believe no one wants to make a CP dx, and maybe this will change when we see the orthopedist in 2 weeks.
Even though he is finding it challenging, the walker is doing him a lot of good. It is very difficult for Edwin to even stand in the walker because he is so unsteady weight bearing. His feet turn completely to the sides and he sways while standing. His low tone is extremely pronounced in this standing position with nothing to lean his chest on.
When Edwin tries to take steps in the walker, his movements are very "classic CP." There is nothing fluid about the movements at all, and they are jerky, unsteady, and disorganized. He has maintained standing and taking steps which is AWESOME! But, many times he drops to his knees, and will even knee walk WITH his walker to where he wants to go! LOL! If you'll recall Serena knee walked for quite some time as well.

There is zero doubt in my mind that Edwin needs AFOs, or DAFOs, I am not knowledgeable in orthodics, but have a feeling I will be soon. I can't believe I allowed the first orthopedist to rush us out, but in retrospect that was the day Edwin began his cold that ended up in pneumonia and I guess I didn't want to stress him, and, admittedly, I'm sure part of me *wanted* to believe he didn't need them.
Again, I am in limbo. So many medical professionals have told me he is just delayed or has this transient dystonia bs. Remember we were told if they sit by 2 they will walk? I think Edwin will walk eventually, but he is now refusing to sit on his bum. He "w" sits 100% of the time without a lot of help from us. I can't plop him in sitting at all, and physically have to have him sitting in between my legs with my legs over his, with a toy and if he is interested in the toy he won't notice me taking my legs off of his legs. Once I do that, he IMMEDIATELY gets out of sitting and pops in a "w" sit. I'm worried about his hamstrings and am frustrated in a sense that I can't do more to encourage him to sit on his bottom.

I'm really, really tired of being in limbo. When people ask why he isn't walking, or why he has a walker now, or why they can't put him down on his bum to sit like you do with most kids, I want to say "he has cerebral palsy." I guess I want a reason, a diagnosis. It's kind of like that show Mystery Diagnosis. You can't really move forward or get the right treatment until you know what the issue is.
I am anxiously awaiting our appointment with ortho. Edwin will have the walker and the orthopedist can't rush us out like the previous one did. He is going to watch Edwin try and walk in the walker. Watch him pull to stand with both feet at the same time pointed east and west. Watch how he now REFUSES to sit on his bum and only wants to "w" sit.
It's not that I want my son to have to go through casting, and wearing AFOs, and all that accompanies it, it's just that I feel like he needs them, that he is similar to other kids who have them who also need them and do amazing things with them. I've been watching some youtube clips of other kiddos with CP and it just seems so evident to me that Edwin has cerebral palsy. Again, I just want to make sure we are doing everything we can for him. I don't want to see him struggle unnecessarily.

With all that said, it obviously changes NOTHING about how I feel about Edwin and how extremely proud I am of him. So he's not taking off in his walker like I would have hoped for him, but that's ok. I'm not exactly mourning the "typical" experience, because quite frankly nothing has been typical since the day they were born. Moreover, we made many thoughtful, heart felt decisions in the NICU regarding Edwin's care and I always believed that he would be impacted by his prematurity and degree of oxygen instability during the first 2 -2 1/2 months of life. So it's not like a punch in the gut at all. It's something I've been emotional prepared for all along. I feel immensely grateful for both Serena and Edwin, and I am here for the long haul. We'll get there, it'll just be on their own terms and on their own time.

So here is a video montage of a few clips from Edwin practicing his with his walker on Friday. Daddy is standing behind him in many so he wouldn't go too fast and only get one giant step in before falling to his knees. So he helped guide the walker from Edwin going too forward too fast. But Edwin did walk from the french doors to where I'm sitting without anyone helping several times. I didn't get that on video though. It's not the "prettiest" video of a kiddo in a walker, but it a beautiful start to me :)

Make photo slide shows at www.OneTrueMedia.com

***And how could I have forgotten to tell you?!?! Serena had her modified barrium swallow, drank whole milk without ANY rice cereal and...... NO ASPIRATION!!! The surgery worked!!!! They x-rayed while she drank out her bottle, no aspiration or penetration! Turned x-ray off, let her drink, turned x-ray back on...NO aspiration into the airway! Hurray!!!!

Quick video of our day at the lake.

Make photo slide shows at www.OneTrueMedia.com

Only some parents would notice this...Did you see both my kiddos in the sand?!?! No sensory defensiveness toward sand, and Edwin officially crawled all in the grass yesterday! YAAAAAHOOOOO! Knock on wood, there is no texture they dislike now!!!

Getting over the 100 reader limit

Hey all,
As you'll recall, I have reached my max of 100 readers on this now invite only blog. I have decided to try and allow more by creating an email address that will allow others to read using this same email address.
The sign in is 23wktwinsreader@gmail.com and the password is blogreader. SO if you know of any TRUSTWORTHY people who are not readers feel free to send them my way so I can give them this info. I want to be a resource to as many people as possible while still maintaining some privacy.
Don't forget to check out the previous post with pics of my cuties!!!

Could they be any cuter???

Strike a pose Beanie girl!

Very happy and proud in his walker!

Daddy is the coolest!!!!


Reason for Edwin having the pink bottle? Daddy asked Serena which one she wanted, and she picked the clear one. Poor E. lol.

The story behind the walker

Okay, so as many of you know I have been asking PT for a walker for several weeks. She did not feel he needed it yet, as he has recently just began to crawl correctly and felt he needed more floor time and crawling time as part of typical development...get good at crawling and cruising...then walk.

Well Edwin has been doing great with crawling and within the past two months he has finally developed arches in his palms!!! For anyone with a delayed crawler, who preferred only to crawl using his forearms, you would know the arches in the palms do not develop. He had extremely flat hands. Not being used to having hands flat to the ground in crawling could have also caused his sensitivity to grass, dirt, and leaves on the ground. To our extreme delight, Edwin has outgrown his fear of the ground, and now crawls around EVERYWHERE outside, even in the dirt. We don't have much grass in our backyard (we have outdoor carpeting for themn to play on), but I have a good feeling he'll be ok with the grass because he now will crawl on the leaves and helicopters on the ground, whereas before he refused and would get up on his knees with hands in the air whining! MAJOR progress for our guy.

So anyway, you'll remember that last time we met with PT she said she would bring the walker at anytime, but that it would be for me not for Edwin. I finally said "oh well" and called and left a voicemail saying "even if this walker is for me, I'd like to at least try. Will you please bring it to ease my mind." And to my shock, yesterday after not seeing her for 3 weeks because she was on vacation, she brought it! I wasn't even sure she got my voicemail!!!

So it wasn't like Edwin got in the walker and began walking all over the house. He is a cautious boy, and first got to know the walker by inspecting it, trying to touch and move the wheels, and finally pulling up on it. We put him in properly and he put his hands on the handles and stood. Sometimes he drops to his knees because he feels unsteady, but he was able to stand and take steps!!! This was so huge because it takes a lot of strength for him to even stand upright in the walker because of his low tone. His feet are turning out A LOT, and I am so happy I made an appointment with a second orthopedist for a second opinion weeks ago (the appointment is in 2 weeks from now). Now we can bring the walker and show him how his feet and ankles look. Seeing Edwin try and take steps, it is painfully obvious that this will be a process for him. He has a long way to go until independent walking, but this is a tremendous start for him, and I am extremely excited about the walker, and his ability to stand and take steps in it. I know he will only improve with time, and am so thankful he is beginning to experience what it feels like to be up off the floor and some form of independence.

Of course I'll keep you all updated, and will surely get a video of him in it this weekend. He is truly an amazing boy, and I my heart is full of pride!

Look what we have!!!!!

!
!
!
!
!
!
!
!
!
!
!

Happy 4th of July!

Can we say teething? All 4 of Serena's 1st year molars have finally broken through. Edwin's bottom left tooth FINALLY popped up...waiting on the right one, and his top molars have both broken through. They are growing up so fast!!!