Apoocalypse 2012

Tonight we began "the great cleanup of 2012." Wait...let me back up. (Pardon the pun!)

Last Wednesday we were able to secure a last minute appointment for Summy with the GI doctor at Children's hospital. We've been waiting months to see him and had an August appointment.

After going over everything we have been doing and everything we have done, he assured us it was all what we should have been doing. An internal exam revealed that the muscles were strong but the colon was stretched to the size of an adult. (My heart hurts writing that!) He told us "some cases are easy, others hard. Sumner is hard."

So tonight we began "a-poo-calypse 2012" as I am calling it. A 5 day regime of Miralax, ducolax by mouth, and adult enemas. Followed by daily Miralax and 3x a week suppositories. We return in 5 weeks for a recheck.

I wish I could wrap our house in a preemptive pull-up!

can I have your attention, please?

We just got back from Jack's neuropsych appointment. After a lot of testing, Jack was diagnosed with:

Developmental Coordination Disorder
ADHD (inattentive subtype) with sluggish cognitive tempo
Hypertonia (low muscle tone)

Along with his previous diagnosis of SPD. Jack is an alphabet soup.

We discussed medication. I will not lie, it scares the crap out of me. I have seen children on meds who look like zombies. They obsess. Plus, he explained that a side effect can be loss of appetite. Jack doesn't have any weight to lose. So I am still digesting, and I am hoping that I will know what to do about medicating or not medicating. I just love Jack and I want to help him to be able to be the best kid he can be. I also want him to be able to focus and learn in school. Medication scares me.

Anyone out there have advice or thoughts about meds?

On a side note, he felt much of this was from the traumatic birth.

testing, testing...

Is this thing on?

We've begun testing with a top neuropsych for Jack, and appointment number two is tomorrow. I am anxious to see what the testing and observation uncovers, but I am very thankful that we have started down the path to better understanding both boys.

Sumner, on the other hand, will begin testing with a psychologist shortly.

Both boys continue to have accidents. It is SO frustrating. I pray and pray we can get to the bottom of what exactly is going on and can get them to stop. My private fear is that they will struggle in kindergarten socially if other kids figure out they are having accidents. I keep trying to explain this to them, but I feel like it is only making us all more frustrated. Sometimes they get teary and say "I promise I'm not doing it on purpose." It breaks my heart because I feel like we've taken a thousand steps back. I've decided if we don't see improvement soon, like in the next month, I'm going to call the pediatrician about it. I've been following the guidelines in the book I posted about, and I believe we have things "moving" but I'm not sure how much damage they've already done internally.

Kindergarten registration is only a few short weeks away. I cannot believe it. I am so excited for them to start kindergarten. My only fears are them overcoming some of the things we have been dealing with.

We started with a new OT (our previous, fabulous one found a new, really great for her, job) and she is also really fabulous. At first I worried she wasn't pushing them enough but Summy's melted down after the last two sessions which tells me that it is hard. My heart broke on Friday because while waiting for Jack's turn with the OT, Summy laid on the floor and spun the wheel of a balance bike over and over and over. (Stimming.) He was also repeating a phrase from a song over and over. It's moments like these my anxiety starts to rise and I have to try and calm myself. Mommy fears. I repeat this mantra to myself:

"My children are amazing, special, and I am blessed we are all here and I have their lives and my own life. They are never going to look the way others expect them to, but instead I need to take a deep breath and learn from them."

I know it is a double edged sword the idea that they will attend the school I work at. It will be impossible for others not to judge them, and in turn judge me. I know we have done enormous amounts of work with them and they have made amazing strides. I have to stay firm in my knowledge that those people who will nay-say them, put them down, or judge them negatively cannot affect me. I have to let it roll off of me like rain and focus on raising my beautiful boys. Sometimes that is easier said than done, but it has to happen. I continue to be as open as I can about them, hoping that our journey can help others.

Goodness, where have I been?!?

I cannot believe how long it has been since I last posted. So much to fill you in on, and so busy!

Evaluations through the school district have been going well. Sumner's evaluation was completed and showed many things we thought it would. Although it is completed and we are happy with the results, we have decided to pay for him to be privately tested by a psychologist. We need to know exactly what is going on with him, and decide if we need to tailor his therapies to match any new diagnoses.

Jack's school evaluation is still underway. We have also decided to have him tested by the top neuropsych in the city. He had his first appointment on Wednesday and it went "well." Jack tired extremely easily and the session lasted about an hour and a half. We are anxious to see exactly what the testing uncovers, but the neuropsych already noted low muscle tone for Jack.

Both boys have been having tons of accidents. An incredibly frustrating amount of them, actually. We already knew Summy had encopresis, and Jack was diagnosed with dysfunctional voiding at the 5 year pediatrician appointment. However, I am exhausted from changing their clothes constantly. Someone on my SPD list posted a link to this book, and I ordered it Monday and have been avidly reading it. We're hoping to "clean them out" and see if that helps them stop having so many accidents during the day. (Maybe Jack will then night train???)

Soccer has had ups and downs. The first game went really well, but last game was a struggle. Jack was exhausted and tried many times to get out of playing during the game. Super embarrassing. He did make it through to the end with some encouragement/threats. Hoping tomorrow goes better. They both enjoy playing which is the important part.

Haircuts continue to be the bane of my existence. (I still cut the boys hair with scissors.) Anyone out there have suggestions of what works with your kids?

5 Year check up

Today was also the 5 year appointment for Sumner and Jackson. I was dreading it because now that they are 5, they pretty much know that this appointment involved shots. Sumner spent most of the morning trying to rationalize why he didn't need shots, ("how about instead of 4, zero!") and flat throwing his brother under the bus. ("How about none for me, just Jackson!")

It wasn't pretty...the shot part. It took both of us to restrain them. Sumner went first, and we held him down, shaking and sobbing. Sumner once removed a syringe from his leg mid-shot and has a huge scar to show for it, so we pretty much have to hold him down for fear of him doing it again. After he went (they made Truman go first) Jack climbed up, seemingly subdued. Unfortunately he had more trouble than Sumner and even bit me while I was holding him. (Totally out of character and I believe unintentional.)

Thank God the next round isn't until age 11.

Jack was also diagnosed with dysfunctional voiding. He's been having increasing accidents over the last 6 months or so, mostly bladder, and mostly when he is napping. (He still naps 2 hours every day.) Because of this, we have to start him on daily Miralax, like his brother, and remind him to pee every hour. Heavens. That is a lot.

The pediatrician also diagnosed him with Dyspraxia/Developmental Coordination Disorder. We're still actively pursing a psych eval for both kids, but in the meantime I feel like we might have a step toward understanding some of Jack's motor issues. His OT completed a BOT for him and the results were somewhat shocking in how poorly he did. The pediatrician would like him to go to a neurologist as well.

Sometimes I feel like I am swimming in alphabet soup. I keep telling myself to remember that the boys are healthy, happy kids. Well, except for when they are getting shots.

2 Month check up

Truman had his 2 month checkup today. He was 9 pounds 9 ounces, and 22 inches long. Everything is going well with him, but we have to take him in to the ENT. Some nights we can hear him snoring/he sounds like Darth Vader breathing. In the hospital they gave him saline nose drops, and we mentioned it at his newborn appointment and 1 month. The pediatrician said it could be something he grows out of, OR enlarged adenoids, so off to the ENT we go.

He was a total trooper for the shots and cried only a teensy bit and then stopped and went right to sleep. He actually slept through most of the appointment, which was amazing considering how loud his brothers were. (They all had an appointment together.)

update

After a run of x-rays that came back normal last week, I am going to see a GI specialist today about problems I am still having after the delivery. Overall I am doing better: I am off the heavy pain meds and feel able to go out of the house a little bit now, but I also developed mastitis so I've been on powerful antibiotics for that.

If it's not one thing, I swear it is another. Looking forward to getting more answers today. I also have been googling a lot of the problems I had with adhesions and things that have happened after the surgery and I am finding I am not alone. I might need to look into Mayan abdominal massage sometime down the line.

surgery, again

Well, the ENT confirmed that Jack needs surgery ASAP, so he'll be having surgery to cauterize his nose on Tuesday. Say a prayer for my little guy. I am praying it is easy, and we have no nosebleeds between now and then.

This is his third ENT surgery! I think they're going to put his picture up in the office and name it after him! LOL!

update on Jack

We just got home from the surgery center. Jack's doing well. He freaked out a little in the recovery, particularly regarding the IV, but is now resting comfortably on the couch.

Thanks for your prayers!

Surgery tomorrow

Jack's surgery is scheduled for 8:45 tomorrow morning. We're hoping after the adenoids come out and he gets another set of tubes, his hearing will improve.

Say a little prayer for him! I'll update you tomorrow when it is done!

Surgery for Jack

Just wanted to tell you that Jack will be having surgery on Feb 23rd. He'll have another set of tubes placed and his adenoids removed. While the surgery is not too scary, any time a little one has to be under anesthesia, it does give me a little concern. Please say a little prayer for Jack a week from Tuesday. We have a busy week here with their birthday, starting preschool, and the surgery.

Thank you as always for keeping us in your prayers!

A double dose of snow days!

We got the second big batch of snow yesterday and today, and so we got both days off of school, which was fabulous. Yesterday the boys helped me make cupcakes. It's often hard to catch a picture of the two of them I love, but I got one that was just fabulous.

Tomorrow we find out at the ENT if Jack will need another ear tube/adenoid surgery, and the boys will visit their new teacher and their special needs preschool classroom in preparation for them going to school on Tuesday.

ENT drama

I took Jack in to the ENT because he had a pretty bad ear infection that a. pushed one of his tubes out b. didn't respond to one round of ear drops c. apparently did respond to another round plus oral antibiotics, but he had an allergic reaction to said antibiotics.

So at the ENT he confirmed our fear: while the ear infection did clear up, there's a ton of fluid on the ear drum again and his hearing has been compromised in his right ear. (insert my husband's joke here: "what did you say?")

So we go back February 11th and if the fluid is still there, Jack will not only have surgery to have ear tube set #2 placed, he will also have his adenoids out.

I am not stoked at all, but the idea of hearing loss isn't a grand one either. I'll let you know what we find out.

Updates, Water Babies, and the best thing about twins!

I have lots to update on!

Our appointment on Friday at the dentist went very well. She looked at Jack's teeth and did in fact confirm that this is yet another wonderful preemie side effect. When Jack was intubated for his CPAP, there was damage done to his teeth. There is a lack of enamel, but it is hard, not porous/soft, which is good news. They will eventaully bond/cover it with whit to prevent cavities and for cosmetic reasons, but not till he's older. We return next year for a re-check.

Sunday night the CMOTC (local mothers of twins group) had their pool party at our local rec center, whcih is fabulous. The boys lived up to their nicknames completely and Jack truly was our little "shishy." He *loved* the water and splashed, taking turns going into deeper water with both D and I. Summy, however, sobbed hysterically and shook. Imagine this: tiny baby sitting in 1/2 inch of water sobbing and screaming, while shaking. It was all very dramatic and hilarious! He say for the end of the time in a towel on my lap and waved to Jack. LOL!

And now, my favorite thing abotu having twins:

...so the therapists have been working with Summy b/c up until about a month ago he never would bear weight on his legs. He still stands uncomfortably and doesn't pull up. We've been working on "standing" him at the couch and cheering him on, to let him get used to the sensation. He usually clutches the couch in his little hands. He can stand, when positioned, for 5 minutes now.

Tonight he was standing and we were saying "yay Summy" and Jack crawled over, stood up, and gave him a huge kiss on the cheek! Too precious!

Big Boys!

We had our second to last Synagis shot of the season today, and Sumner weighed 18 lbs, 1oz (Way to break 18 pounds...woo hoo!) and Jack a whopping 16 lbs, 11 oz!!! What big boys!

At the pedi's office he expressed concern over the growing brown spots on Jack's front teeth. He thinks it is from an apparent lack of tooth enamel. He said we need to head ASAP to a pediatric dentist, and I was fortunate enough to get an appointment for tomorrow at 9 am. My online research indicates this might be because of the boys being premature, but I'll know more tomorrow. Wish us luck!

Three singing pigs say "la la la"

No word yet on the car...

I'm trying to rationalize the thought of putting the boys in an actual daycare CENTER next year. This place is highly recommended, and while more expensive, they are RAVED about. 4 other teachers at my school have their children there. But I keep thinking...*my* kids? My tiny little baby-men? They seem too little...sooo hard to believe. I worry, as we all do. Then the guilt sets in. Our sitter had said in almost the same breath after telling me she couldn't watch the boys..."and I think you should stay home with them next year." There is was, old nagging guilt, back for me again. And the pediatrician said "really? they'll be old enough to start in August?" (Center only accepts 18m+) And I worried...tiny preemie babies+daycare center=feel guilty mom, stay home with us mom, big worries mom?

The therapists could go to the center and work with the boys which would be super. But our hopes of going to MRDD preschool next year are now dashed.

And the mommy guilt returns. Why do we do it to ourselves? Will any decision really be OK?

I had the chance for a rare girls evening out this week at the melting pot, my fave fondue restaurant. Most of the talk centered around babies. Aunt E happened to be there too (she is PG, did I mention that?) and she got frustrated with all the baby talk. I was led to remember a great article in this month's real simple magazine about the new-mother-lose-yourself-and-your-identity-in-your-new-child syndrome. It's unavoidable, really. Even now I have a hard time talking about anything other than teaching and my boys, as those are primarily the only things I have the energy to do anymore. The hormones, the sleeplessness, they all make you crazy, and so baby-focused. Sometimes I wonder, will Aunt E feel the same in 22 weeks?

We were reading our nighttime standard, moo baa la la la by Sandra Boynton, and when we got to the part "three singing pigs say" Summy pulled his paci out of his mouth, looked dead at us, and said "la la la." It was one of those parent moments.

Summy's third tooth to pop through was not the previously stated top tooth, but a pointy incisor. Strange!

Jack's croup is gone, but he developed hives and a horrible rash wed. that never went away. A pedi appt. today confirmed not much. Benadryl isn't working and they think he's allergic to "something" (not food) and we don't know what. Not much help. He inherited my sensitive skin, apparently.

Jack is a trooper!

Our appointment today was frustrating and good. We got there 15 minutes early which I thought was an accomplishment, but they made us wait and wait. Jack couldn't eat for 4 hours prior so I had timed it perfectly...so eventually I caved and had to start feeding Summy. D came from work and sat with me and fed Summy, and finally at noon (our appt was 11:40) I got up and told them they'd better take us b/c Jack was getting frantic hungry, and we couldn't wait any longer. They took us back and the tech and doc told me they'd been waiting for us too and it made me even madder. I guess they had to print labels and that was what took so long...you'd think the info'd be current from them being in the NICU 2 mos. prior. ARGH!

Jack was so cute, he wore a tiny baby hospital gown with pigs on it. He ate the barium down fast and it was really neat to watch on the screen. All in all everything looked AOK, and there were no herniations or pyloric stenosis. Good news! The doc was a little concerned about him barfing up 9 am meds at 3 pm, but said everything looked good. He didn't reflux (I gave him the am Prevacid dose) and the doc later told me I wasn't supposed to, but no biggie. We already know he refluxes.

So good news. I'll be interested to see what the GI doc says. No word yet on when that appt. will be.

Pray for Jack and Mamaw

Jack's got an upper GI study scheduled for Wednesday at 11:40 am.

David's Mamaw has brain surgery to remove 2 tumors scheduled for Sunday at 7:00 am.

4 month stats

Sorry to be a day late! Our fourt month stats:

Sumner

11.63 lbs (11 lbs, 10 oz) 4th percentile....woo hoo! We're on the charts!
24" long (21st percentile)
16.25" head (21st percentile)

Jack

9.75 lbs (9 lbs, 12 oz) We're not on the charts yet
23.5" long (11th percentile)
16" head (21st percentile)


We discussed Jack's feeding again and will go next week for an upper GI study, and then to a GI doc in 3-4 weeks, whenever they can get us in fastest. We talked about Jack not being very hungry, and how he threw up his 9 am meds at 3 pm, and our pedi agreed we need to check him out.

I'll be posting 4 month and Rachel's pics soon!

Also, tonight is our first time out alone...Aunt CC and Uncle Mike are watching the boys!

Reglan

I forgot to add: we are now one week reglan-free for Jack! He hasn't thrown up in one week either! Good news!