Wednesday, March 31, 2010

The need for time...

The boys had speech therapy yesterday and I was able to discuss the boys delayed development. He agreed that the boys would benefit from the summer class, but does not have any concerns about their speech other than that Brady is comfortable with the level he's at and gets everything he needs from me in a day, and Jax is in the middle of learning how to walk, and motor skills overtake speech skills. He truly believes they just need time and he sees no other signs of bigger problems. He thinks the hearing test is good to rule things out, but is confident there are no issues there either. He did mention "identical twin boys have the hardest time"... I have heard white male preemies (referred to as WIMPs in the NICU) and twins, but have any of you out there heard this?

He did a few activities with the boys that made me feel better. One including flash cards which proved to show Brady excited about the banana and even went as far as trying to pretend to eat the picture. He pointed out a few different things that the boys "comprehend" as well. They pretend to put shoes on, and go to the door when we're saying good-bye to someone. Brady understands the words "put back in" and "close the door", and of course they love to pretend to clean and talk on play phones. Brady loves running to the gate at the stairs when I say "nap time" or "bath time". So I'm hoping the therapist is right, and they just need time. He promised this lagging is not an indicator of the boys being "slow" with learning in the future and there will come a time when I don't see a developmental gap between them and their peers. I hope he's right!

As far as Jax's feeding practice with the therapist, it went as usual. We did find that Jax was a bit more receptive to opening his mouth while he held the vibrating z-vibe (an oral feeding tool) around his mouth at the same time. I joked that maybe Jax will have to be brushing his teeth while I feed him. I'm really hoping he can get into a feeding program at the hospital.


Brady showing me where his "head" is during a song.
(The one and only body part so far, and it must be *sung, not spoken.)
Brady got into the laundry room and is pretending to be daddy by mopping the floor.
And the other munchkin who broke into the laundry room. 
Jax loves to start the washer and dryer several times a day.
The boys playing with their Spider Man stickers.
And no post is complete without a picture of the boys completely taking something apart.

Monday, March 29, 2010

They like to eat crayons

On another note, Jax bit the end of a crayon off yesterday and gagged until he vomited twice. I had my back to him and he was gagging in a choking sort of way. I dug my finger in his mouth and pulled out a piece of crayon no bigger than a finger nail. This tiny thing set off his gag reflex so badly, it made him puke violently. This poor kiddo's oral aversion and gag reflex from being on a feeding tube his whole life is heart breaking. Sweet Brady went and got me towels to wipe up the vomit... he is such an amazing kid. Usually Brady is the one eating all the crayons!

We're supposed to be giving Jax tastes of our meals (like sauces, dips etc) so I gave him some marinara sauce from my dinner and he actually looked like he enjoyed it and OPENED his mouth (he never really does that) so I gave him more and the cheese in the sauce was too thick for him, so he gagged pretty badly. (sigh) I think I'll be begging and pleading with the feeding clinic coordinator at his appointment in April to get him into a feeding program. This just feels so much bigger than Jason and I and I feel like we're spinning our wheels some days. 

Developmental Delays


Today was a rough day... on me, not the boys. Jax had his physical therapy early this morning and it was possibly going to be his last session. We moved this session back 4 weeks to see if he could stand and walk on his own. But it's clear that Jax isn't strong enough to do it, and having to wear his backpack for some of the day doesn't help either. So we're submitting paperwork to try and get more sessions covered by insurance.

The therapist and I had a long talk about the boys development up to this point. She was singing a song about finding Mama, and neither boy cooperated (even though she's Jax's therapist, she includes Brady in the songs and some play). She started asking me about any words, or recognition, or comprehension and things like that. She's okay with Jax not walking since she knows the reason why, and she's okay with the boys not actually "speaking" since they're 1. white males 2. preemies 3. twins 4. medical issues for one (all these categories can contribute to developmental delays), but she's concerned that the boys don't have recognition of things like Mama or Dada. I actually broke down crying because I've always known they have developmental delays, and I've always been decently okay with it and try hard to give them all thy tools they need, but today really made me stop and think more about it. 

The therapist and I are just confused as to "why" they are so behind since they're in such a learning environment with age appropriate books and toys, and me talking their ears off about animals and the sounds they make and my awful singing about where to find which body parts. She seemed puzzled and kept saying, "they're actually really smart and attentive kids, so I just don't get it".
I try not to compare my kids to others, so I've thrown that out the window before they even left the NICU in the hospital, so that's not what bothers me. What bothers me is that my 20+ month old boys can't even point out who I am, or who their dad is. I think that would bother any parent in this position.
She mentioned getting the boys into a special 6 week class this summer which would be great, but she also wants to investigate what's going on. Her only suggestion off the top of her head was a hearing test. Which I've been asked about by a few other professionals. I know I had a hearing test scheduled in May at the hospital during the next NICU follow-up, but I went ahead and called today to just check for any earlier spots. Obviously the boys can hear, but they want to test how well. If you know me, I just want to be able to check this off as a possible problem instead of worrying about it for the next 6 wks. I'd like to find out for sure if this is just something the boys need more time on or if there is a physical problem.

The NICU follow-up nurse will be calling me back hopefully in the next day or two to see if we can get in earlier. She's was surprised the boys didn't automatically get this screening, but I remember having to skip it at their appointment because Jax got so sick and it fell through the cracks. The nurse asked if we had gotten the boys into speech (reading her notes that it was recommended by them) and I said yes, but their progress is slow. She asked if I could estimate their word count (20, 50, 70 she said)...I said none. Unless you count "yes, yay and yeah" from Brady. She gasped.... and I cried... again. She apologized and felt so bad. I said our biggest concern is that they don't act like they even know what the words mama or dada are and she said it's imperative we get this screening done to rule things out. I'm hoping obviously this isn't a hearing issue, but rather they are just doing things on their own schedule. I'd rather find out now to work with them to be the best they can, rather than look into this when they're five.

I've been promised up and down and given tons of support by my fellow MoMs that this does not indicate the boy's learning pattern or their future IQs, but rather them just needing time. I hope they're right.

Okay, I could write 20 more paragraphs, but I'll stop here. Both the boys have speech therapy tomorrow, so we'll see if that therapist spoke to Jax's PT and see what he thinks of all this. Tomorrow is a new day... and as someone pointed out to me today, I'm just worried since Jason and I always looked at the boys so perfectly, and we know how far we've come and how happy the boys are. Maybe nothing is wrong, maybe something is. Either way, tomorrow is a new day... and we know we do everything we can to make each day a little better. It's all anyone can do.

The boys in their car-cart at the grocery store yesterday. 
They sure do make a lot of friends when we're out!

"Do not spoil what you have by desiring what you have not; but remember
that what you now have was once among the things you only hoped for.
-Epicurus (341 BC - 270 BC)"


Saturday, March 27, 2010

When child locks fail...

this is what happens in my house if you have to go to the bathroom or put a load of laundry in...


Eh... so we made hats out of the ruined tin foil. 

Thursday, March 25, 2010

Tube change

Jason and I had to play doctor and nurse (I was the doctor) and replace Jaxon's g-tube last night. We couldn't get his bedtime supplements through his tubing, and realized it wasn't the extension going into his tube, but rather his actual g-tube. So we decided to take it out and look at it. Well it was all black and clogged up. So as Jason held a cloth over Jax's open stoma site, I unclogged the tube. We reinserted it and inflated the balloon and tried again with the supplements. No luck, it was obvious his tube was done. Thankfully we had an extra g-tube on hand (I keep an emergency tube-change kit right inside his backpack). In comparison to the new one, this old one (which is only 6 weeks old) was pretty gross. So I saved it in a baggy to bring to the GI doctor next month and inquire about why it's so gross after just 6 weeks. Jax only gets 7 of these tubes a year from insurance, so it's not like we can change it every 6 weeks, and not to mention in the case of one needing changing due to a leaky balloon or some other failure (like this one). So we'll see what the doctor thinks about it.
Jax didn't seem to be in physical pain during the tube-change out, but he was screaming pretty hard because Jay had to hold him down at times, and there was a little blood. Poor peanut. But it's all working well now. It's nice to not have to rush to the hospital now when there are tube problems (as long as I always have a spare on hand!).

We're working really hard to get Jax to take his first steps since he's looking like he's ready. We just need to find time to do it when he's not on his backpack and I want to do it when Jason is home to help me and to witness it. Every parent likes to see first steps, right?! I'm hoping it will be soon.
Brady's cough is remaining the same, so I'm glad that didn't get any worse. He loves to say "yes, yeah and yay!" so that's pretty much all you hear now days around the house. They LOVE sneaking into the laundry room and starting the washer and dryer (sigh...) my little monkeys.


Here is the tube we took out of Jax. The balloon (which is the black part -it's not supposed to be black) is deflated so we could take it out. When you hook a syringe up to the side, you fill the balloon up with water and that holds the tube in place inside of Jax.

Tuesday, March 23, 2010

The love of sweatshirts

Brady has a bit of a cough with his runny nose right now, and I've been directed by the nurse to watch his breathing etc. He's not acting any differently, except maybe wanting a few extra hugs through the day (which I'll gladly take). I'm not totally shocked since we had the boys around many different children over the weekend, but hopefully this just remains a small cold.

I was able to get Jax an appointment with the feeding clinic at Children's Hospital for the same day as his next GI follow-up appointment. It is on April 13, and I also feel confident for a nice weight gain and a meeting with the nutritionist too. I want to discuss the possibility of getting Jax into a feeding clinic program (which includes nutritionists, speech therapists, psychologists, GI specialists etc). They have in-patient programs and out-patient programs which require strict requirements to qualify for. Our biggest part of requirements were to get Jax feeding into his stomach from his tube and also having it done via "bolus", which is giving him his tube-feedings 3x/day to mock meals. He used to be fed continuously from a slow drip into the intestines 23hrs/day. So we have that down, but I'm not sure if we have it down enough, like are his bolus times too long still (he gets fed 2hrs in the morning, 3hrs during the afternoon nap and 2 hrs at bedtime). We can only shorten these feeding times if we can get his pump rate up, which we are working on (he's at 110mls/hr).
I'm not sure of the other requirements (time frame family has tried getting child to eat on their own, eating behaviors of child, health, etc...). So I'm interested to see what they have to say. Jax has good days of eating (1/3 jar of baby food in one sitting) but will have bad days where he'll take in next to nothing. And I can't get him past stage 1 puree baby food. He doesn't like it thickened at all. Even green beans or peas pureed don't work well with him, but he likes squash or sweet potatoes since they're runny. So I'm hoping for some extra help to work toward our goal of oral feeding and no tubes. I need help and I have no problem saying it!

Here's a few pictures of the boys on our way out of the house yesterday. I love how much easier it is to get out of the house by just throwing on their shoes and a sweatshirt rather than the entire winter gear getup!
(I can see how people would think they look alike in these individual shots of the boys below)
 
Jax
Brady
The boys flashing their daddy-dimples.

Monday, March 22, 2010

On the run

We had a nice weekend. Jason's friend and his family came to visit Saturday evening. The boys had some playmates for a few hours, which is always nice, although they look so TINY when next to other kids. We also took the boys shoe shopping on Sunday morning, which turned out to be productive. Although, we did learn that "running in quick" with the boys without their stroller proved to be a small circus. Putting them down for a second to look at something always resulted in a chase. So I learned that even when Jax starts walking, I will always need their double stroller when alone with the boys for quite awhile yet. I think I apologized to the woman helping us a hundred times and she just kept laughing. Oh my gosh...we're the people in the store with the toddlers running around...oh boy! The boys weren't "sassy", but they like to be on the move and giggle the whole time...either way, it resulted in Jason taking Brady out to the car rather quickly when he kept running. I see a lot of that happening in the future!
We took the boys to a friend's house Sunday afternoon to watch the Badger game and to let the boys socialize with a small group of other toddlers. I have to admit that these boys are quite the charmers!
I'm sorry I don't have pictures since I forgot my camera!!! I know...what was I thinking?

Friday, March 19, 2010

Pictures that will make your day

The boys were super giggly yesterday, so I took lots of pictures! 
Enjoy...


They were hanging out together by the couch talking in their jabber 
and laughing at who knows what!
Jax got up and joined in the fun.
Then Brady decided to lounge and watch cartoons.
(with an angel I see too!)
Ok...now the rest of these pictures are a result of me calling Brady "SASSY" for pushing some of his dinner off his high chair. The boys laughed so hysterically hard, they were crying!





I can't help but smile going through these pictures!! They were besides themselves with laughter!

Thursday, March 18, 2010

Graduate and a weigh-in

Jaxon graduated from occupational therapy yesterday! Miss Karen and Sara came to the house and did an evaluation and he scored in a range from 14-19 months. Remember, Jax is considered an 18 month old by prematurity standards. We think he did pretty well, and certain things like a strong pincer grasp isn't very expected of a child who doesn't feed them self. Considering where he is now, he sure has come a very far way! We think that most things he's lacking in are things that will come naturally in our everyday activities now. I of course always have the option to have the ladies come back out if I feel that Jax is falling behind. But for now we will focus our efforts on physical therapy (getting this kiddo to walk) and speech/feeding. Those few things are some pretty big hurdles to get through, but we'll do it!

I brought the boys into the pediatrician's office for Jax's weight check. He only gained 2oz in the past month, but at least it's something. The doctor will be calling tomorrow to discuss it. My mommy-instinct is telling me that we should see how he does over another 4 weeks, but we'll see what the doctor's opinion is. Remember he lost 2.5lbs over 2 months with that constant diarrhea. Now that we've figured out he didn't need that natural laxative anymore (seems obvious NOW, but in hindsight...) I think the weight will slowly start back up...so we'll see! At least the nurse noted Jax's energy level was very HIGH while at the office (which was closed today as an admin day, but had us pop in for the weight check). Brady was running around having a blast with the receptionist and Jax was screeching in excitement for me to hurry up and finish dressing him so he could join in.  Jax didn't cry once while I undressed him, we weighed him and re-dressed - that was amazing. The nurse asked if his coloring was normal, and I laughed and said, "you mean translucent? Yeah, that's normal for him". Someday he may be chubby with a tan...we'll see!
The ladies loved how the boy's talk like they're bi-lingual - no real words, just a bunch of loud jabber!

Tuesday, March 16, 2010

Absent blogger!

This has been my longest hiatus of blogging, sorry!
Well Jax's cold had subsided decent enough for me to feel okay about leaving. But wouldn't you know it...I got really sick once I left. Of course, right? I got so sick that I had to be the first to go to bed out of the group the first two nights. Such a bummer, but I tried really hard (and took TONS of cold medicine) to forge through and attend all the activities. About 1/4 of our group attended this trip (about 33 ladies) and I had so much fun with them. Our group name is the MoMfia (MoM stands for Moms of Multiples, and the play on Mafia is well, just us being funny since a group of mommies are so bad ass). 

What a wonderful group of women. It was nice to be around others who also missed their babies like crazy, yet needed the break desperately as well. We are such a diverse group of people from all over the country with one very united thing in common. There are so many women in this group who have experienced prematurity, NICU-stays, disease, sad to say - death, developmental delays and the biggest thing...multiple hugs, kisses, love from twins or triplets. I cried when I got to meet/hug Laura from Maryland who I've been talking with for the past two years about our son's health issues, hospitalizations, feeding tubes, feeding progress...we embraced and cried for quite awhile...there's a friend for life...(*Both her twin boys are on g-tubes for vomiting)
I cried having to say good bye to so many, but of course most of all Brook and Jake. They lost their little girls just over a year ago to SMA if you remember. I'm so proud of them...they make us all so much stronger and remind us to be thankful no matter what situation we're dealt.
(sigh)
So many of these girls have supported Jason and I through everything these past two years (two yrs ago we found out the boys were mono/mono twins), and I will never be able to thank them enough for the words of encouragement, the phone calls, the text messages, the letters, the books, the cards, the flowers, clothes, books and other fun surprises to lift our spirits. I have angels all over the country...

Oh how I missed my guys...Jason, Jax and Brady are truly my best friends and I of course had a wonderful time with the girls, but missed my men at home terribly. Jaxon has a MAJOR separation anxiety issue with me. He was getting pretty clingy the week or two before I left, but now I can barely leave the room without him screaming/crying and latching to my leg. Jason said he didn't act like that when I was gone, but he's seriously out-of-his-mind about me now. I apparently will not be leaving his side for quite awhile ;)
But back to reality now! The boys had speech therapy this morning and seemed to point out pictures of flash cards when asked about a ball, doggy and car. I'll be bringing them to the chiropractor tomorrow and Jax will have an occupational therapy evaluation in the afternoon. He may graduate from his first therapy tomorrow! Jason will be leaving out of town, so it will just be the boys and me. Jax also has his weight-check at the pediatrician on Thursday as well. See, back to the daily grind!


I'm sure you're all missing an image of the boys - here you go!



Here is a picture of about 70% of the group during a swamp tour on Saturday morning. I think I'll be getting a picture of everyone from one of the moms who is a professional photographer.
(The guy in the photo was our tour guide named Jason which made us all say "awwwe" since many of us have husbands named Jason.)

Tuesday, March 9, 2010

A little under the weather

Jax has been under the weather a bit. He was very clingy to me yesterday and this morning. He has a very runny nose (all clear) and gagged a bit last night while in bed getting fed thru the tube. We took him off early and he went to sleep fine. He was fine this morning on the pump while sitting up and playing, but got sick lying down during nap time. He puked everywhere. But as soon as I got him up and in the bath he was totally fine. He's all smiles and playing around like nothing happened. So our theory is that he isn't doing well with the post nasal drip of a cold or maybe even nasty teething?

Tonight/tomorrow will be the deciding factor if this is all that is wrong, cross your fingers~
I'm supposed to leave out of town Thursday morning to New Orleans for my national get together of the MoMs of Multiples group...so of course I'm really worrying! I won't leave with the chance of him being really sick, so we'll see how the next 24 hrs go.

(He just dashed across the room to throw a toy at Brady's head and laughed, so his spirits are definitely normal right now)

Sunday, March 7, 2010

Little super heros

The boys had a fun weekend and spent a lot of time with Nana and Papa Letts. Jax is getting pretty consistent with eating a small jar of stage 1 baby food every 1 to 1.5 days now. We'll be starting to thicken the texture and giving more whole milk by cup. He has a weight-check next week to make sure he's gaining since he took such a loss in weight over the past 2 months. We'll still working on increasing his pump rate to shorten his bolus feeds. He's currently at 105 mls/hr and feeds like this:

7:30am - 9:30am
12--3 (naptime)
7-9:15pm (we sneak in and disconnect him while sleeping)

We feed him the baby food before he goes on his pump at these time with hopes that the break was big enough to get him "hungry". The higher we can get the rate, the shorter the pump-feeding times will be, so it can only get better. He's responding really well so far.

Brady's walking is much better. He still needs some practice, but he's sure a daredevil! He never lets a bump, bruise, scratch or cut heal before he gets his next one. His poor handsome face!

The boys got outside a lot since the weather has been mild. I can't wait for spring/summer this year, especially with the boys walking and Jax feeling better. I'm hoping Jax will be walking this spring, so fingers crossed.


I loooove GATES in our house!
(They have full roam of the first floor except the dining room or stairwell, but it really helps!)


The boys received SUPER HERO shirts from Grant and Cade in Texas. They even come with detachable capes! Jax tries every day to be a hero for Grant and his family, I hope he continues...


Do the capes get any better??


The boys outside enjoying a walk today


Jax


Brady

Wednesday, March 3, 2010

Phone confrence with alternative doctor

I had a VERY interesting phone meeting with Dr. Hicks (Jaxon's alternative doctor). He agreed that his natural laxative should be labeled "as needed" now, but he wants Jax to remain on his current (long) list of supplements until we check in again in 2 months. Apparently once a person is reacting 100% to their supplements, he prefers them to remain on the full list at least 6 months. Although since Jax is a child and responds in almost half the time, he's willing to revisit the list in 2 months from now (since Jax has been responding so well for over a month now). He said that since Jax is using his stomach and ingesting real food, that his organs will be asked to function at a higher level, and he will need these. We'll be doing some blood and stool testing later this summer to see what total supplements can be removed.

This conversation obviously led to me asking if this is a CURE since we plan to pull supplements some day, and the doctor said yes. He said that reversing the effects of disease on a body is also attitude, positive thinking and of course giving the body what it needs to function properly. Obviously the conversation lead to how the GI team want to find answers that prove one way or the other that the supplements are or are not the reason for Jax's success. Dr. Hicks said that no motility test will prove anything about supplements other than if there is or is not nerve issues in his gut at that moment. He basically asked what the point of finding that info will do... He also said that pulling supplements from Jax will not give them answers since Jax has built up these supplements for months. So if they pull something away, he may not show signs of needing it for a month later. Dr. Hicks believes that pulling supplements away now will screw up everything Jax has been building up. He doesn't believe there is a way for the hospital to prove what they're looking for, although he'd love it if they could because he'd get more patients :)

He said that my advice to others who suffer from similar symptoms as Jax, should be to have that child/person have their own independent tests done and to start their own personalized regime of supplements since every one's body is different and need different things. No other child will have exactly the same issues as Jax, even if they're given the same "name of disease", and I know this is true since baby Grant has the same disease, but some different symptoms.

I want so desperately to be able to package up the 'CURE-ANSWER' and tie it with a bow to hand over to people to save the lives in their family, but the answer seems to be different for every person. I know that at one time I belonged to an online group of people who were all parents with children suffering from GI issues/diseases. I had posted a question about anyone's experience with alternative medicine. I received a lot of backlash stating it was dangerous to listen to anyone who would claim a cure for my child and my time should be focused on real medical research. I received a VERY different attitude from my online mothers of multiples group who were very behind me and had all the hope in the world. I realized almost immediately why there was such a difference from these two groups. 
These poor parents of disease ridden children were completely beaten down. They spend every single day dealing with tubes, illness, hospitals, specialists, therapists and their hope was broken. I'll admit that every hospitalization or every piece of bad news or every set back of your child can take a piece of your soul. I had a few moments here and there (it's impossible not to), but our family, friends and online community have always raised Jason and I up to the hope of Jax being healthy someday. We owe a lot to a lot of people.

So our calling will be to direct people onto the path we've gotten Jax to. How we will do this is still the question...but if you know me, I have a lot to say and I'll find a way, somehow... I know it starts with hope.


The first official finished jar of food by Jaxon. 
He finished this in 3 sittings, and just today ate almost a half jar in one sitting.


My new favorite image in my mind of these boys. Their wonderment of BUBBLES.
(This was during speech therapy - learning what bubbles are and how they go UP and POP.)





Monday, March 1, 2010

Closing in on therapy

Jax had a good PT session this morning. He only has 1 session left, but we're saving it for a month from now. The therapist was able to get him to stand independently and feels that he finally has a good defense response with his hands/feet and that he'll be standing independently with steps to follow soon. So we'll have a check in with her again at the end of the month since I think Jax needs to be taking steps independently in order to "graduate".

The boys both have speech therapy tomorrow, and Jax is doing pretty good with his oral feeding. He took 1/3 of a small jar of baby food during lunch yesterday and again today (organic sweet potato puree). That seems to be his favorite time to try food of any great volume.

He also had the first "normal" poo in his entire life today. INTERESTING info for you all I'm sure! Jay and I think it's a combo of his motility doing better and having REAL food in his system.