Dr's appoitments galore

3 appoitments in two days....Jonathan and Christopher had ENT appoitments Thursday and Christopher had a GI appoitment yesterday.

Oour appoitment was at 3:15, we got there a few minutes after 3. We weren't seen until around 5. Fun! Jonathan's ear tubes are still in and that is the root of his ear infections. I was told that if they remain in too long they can get infected. He needs them to be removed and he will have patches put on the little holes that will remain. Christopher's left tube is out and non-functioning. He needs it removed and another one put back. I called today to schedule the surgeries but wasn't called back.

The GI yesterday, we were the late ones. We hit traffic and every red light that could have been. We can start trialing the foods that we were told to avoid. So, he cans trial days of dairy, soy and wheat to see how he reacts. Chris has a prescription for priolsec to help coat his esophagus as a help to make sure it’s not inflamed as we do the trial as a precation if his reflux didn’t go away. She would like an endoscopy done at some point but it isn’t something that has to be done right away.

Yesterday during Chris' PT session we tried something new. We used dried beans in a container to have him play in an effort to desinsitise him a bit to different textures. He loves it!

Yesterday we went out for a bit to get presents for George's birthday which is next week. While at Wal-Mart we went to the fish area so we could see the fish there. Christopher got out of the cart (I took him out) and he walked over to the tank, pointed and said "Fesh"! He said it several more times too. This little boy will be getting a fesh soon so he can keep looking at it and saying the word!!!

Happy Birthday Dr. Suess

We celebrated Dr. Suess' birthday today by eating green eggs and ham.

George said he didn't think they'd like them but the boys kept asking for more green eggs. I guess they were a hit!

The never-ending ear infection still hasn't left. Jon started oozing and bleeding out his left ear again....we're going to the doctors tomorrow hoping to start an antibiotic with him, yet again.....we're going to the ENT on Thursday. Both Chris and Jon will be going. Jon needs to be seen for the 3 weeks long ear infection and Chris needs to be seen for the non-functional ear tube and the neurologist said he didn't pass the hearing test even though the audiologist said he did. Then Chris goes to the GI on Friday. I weighed him today....I know he lost some with him being sick but he's back to what he started out at when he was 15 months. He was 25lbs 8 oz tonight. That is even with the calorie booster we put in his milk. *SIGH* Nothing comes easy with this kid.....

George's Aunt Marcia sent me a poem to help comfort and make sense of everything going on with Christopher....

THE WEAVER
My life is but a weaving
between my Lord and me,
I cannot choose the colors
He worketh steadily.

Oftimes he weaveth sorrow,
and I in foolish pride
forget He sees the upper
and I, the underside.

Not till the loom is silent
and the shuttles cease to fly
Shall God unroll the canvas
and explain the reason why.

The dark threads are so needful
In the Weaver's skillful hand
As the thread of gold and silver
In the pattern He has planned.

Author Unknown

The connection between Einstein and Christopher

Einstein was a premiee, so was Chris. Einstein didn't talk until he was 3; Chris isn't talking right now and he's almost 18 months. Chris has the crazy hair-do, so did Einstein. Einstein lived in Princeton; Chris lives near Princeton. Einstein was a genious.....

3 monkeys, stupid computer, first day of school and all the fun stuff that goes with it

I had a nice long thing written and the stupid computer decided to reboot itself. This was last week and I finally got up enough gumption to write another one again….anyway, since last entry….Matthew fell off of the bed and cut his lip and we had to go to the ER. He was playing “monkeys jumping on the bed” with Jonathan and Christopher. He fell off and bumped his head (ok, the inside of his lip) and when we went to the ER they said either one stitch or 5 days of antibiotics. He’s fine now

Matthew started preschool 3 weeks ago. When I took him to meet his teachers before he looked at me and said “Go home mom. I in kool now!” I cried! He was fine. He goes to the potty on his own and has made friends already. On the downside, in the three weeks, he’s brought home a stomach virus, a cold we got a letter saying lice was in the room.

These pictures were from the first day of school.

Matthew started singing "The Days of the Week" song the other day and "Little Bunny Foo-foo" 2 days ago.
*Sorry this is sideways, I'm not sure how to fix it*

Christopher has started his therapies. He has had 3 PT sessions, 2 speech sessions and two developmental therapy. He has started sitting more appropriately instead of in his “w” position.

"W" sit.

This is how he should be sitting.

He’s done few new things as far as speech and language. He repeated “up” last week in PT. He started pointing. He pointed to the bag of tortilla chips and salsa and put the chip in the salsa and then ate it. Last week he said “juice” as well. I was asking Jonathan and Mathew if they wanted juice or milk for lunch and Chris answered juice! He has started to make a noise that I can only describe as the Gary the Snail noise. So, his new nickname is Gary the Snail.

Jonathan really wants to go to school as well. I told him he had to be potty trained before so he has decided that he’s ready. I’m hoping that he’ll be out of diapers soon! We’re going through them really fast! But, the poor kid has had the never ending ear infection; his first in 2 years. Since he’s allergic to penicillin he had to use a stronger antibiotic. It didn’t work, the poor kid has stuff pouring out of his ear! We went to the doctors after about a week but in the mean time he got the stomach virus that woke us up on Tuesday with Matthew. He was put on a different antibiotic but kept puking it up. Not a fun time….on the flip side of it, he slept more and is still wanting to go to bed earlier. Again, another down side, he is falling asleep before bath time. And, he’s giving me a problem to get in the bath when he wakes up. I have started calling him Pigpen.

Back to Chris….the neurologist said what is showing up on his brain is delayed mediation. Basically, part of his brain called myelin isn’t sending the signals correctly which is resulting in him being delayed in motor skills, speech and language and cognition. Basically, there are areas of his brain that didn’t develop properly as of now but they have until the age of two to bridge the gaps. If he continues to have the delayed mediation he will continue to be delayed. That is fine with me. I would much rather have him here with us and delayed than not have him at all. This condition can be caused by a bunch of different things from prematurity to chromosomal disorders so the neurologist wants us to get karyotyping done to see if he does have a chromosomal disorder but she said she doesn’t feel that he does. And she wants us to take him to a developmental pediatrician. Our pediatrician called someone who used to be in their practice and who became a developmental pediatrician from Jersey City and got him in there. It usually takes 6 months to a year to get an appointment. We are on a waiting list to be called if there is a cancellation and we have an appointment in April. Turns out, the guy was George’s doctor when he was little.

The boys have started taking pictures. They love to take random pictures around the house....

Last but not least....a fellow MOM (Mom of Multiples) that I know recently lost both of her girls. They were not quite 6 months old and had SMA (Spinal Muscular Atrophy). The sweet girls were diagnosed with this last month and passed Sunday and Monday. Tomorrow is their funeral. We MOM's have decided to wear pink in memory of Sydney and Carynne and ask that others do to.

Welcome to Holland.....

I hate to be a Debbie Downer but I am. I’ve been having a really rough time right now and since I only share my blog with those who I care about and love, I’ll let you in on things. With all the appointments, evaluations, etc for the kiddies, it’s been rough. I am placing blame on myself for them being behind and I know in my my head that it's not true but I can't help but to question what I could have done differently. I question if I should have allowed them to give me the PICC line when they wanted to when I was 14 weeks pregnant and lost 30 pounds from the throwing up. I question if I should have told them that I had high blood pressure, headaches. If I wouldn't have said and kept him in me what would have happened? It makes it even more difficult when others question the same things. But, the logical side of me says things like stop dwelling on the shoulda, coulda, woulda and start focusing on what needs to be done now.

I have started researching different therapies I can do at home here with Chris. I started reading books on speech and language development and will be looking for books on motor development for him. I pushed and called every day from December 29th until last Monday to get Chris his Physical Therapy evaluation. I finally got that evaluation and was able to schedule the IFSP (the paperwork about what he will be getting as far as therapies, frequencies, etc.) for Tuesday. We will have Matthew's meeting on the 2nd for his speech therapy.

I will be writing to our school district to get Jonathan tested for the same speech difficulties that Matthew has.

I found this poem that may help to show a bit better how I have been feeling.

Welcome To Holland
byEmily Perl Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

"But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It’s just a different place.

It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.



On to a happier note, Matthew is now completely in underwear for both the day and night! Jonathan wasn't quite there so he's still in diapers. BUT.....a few days ago I heard Matthew scold Jonathan for still being in diapers. He told Jon that only babies wear diapers and didn't he want to be a big boy too. We're trying underwear tomorrow in hopes that he's going to take the positive peer pressure to heart! And, Chris has been waving bye-bye to the pee :)

ENT update

The ENT said that Matthew's remaining tube was non-functional and he had a wax buildup in his ears. She removed the wax and the non-functional tube. He sat in the chair all on his own and did wonderfully! Chris had a crust around his left ear so we now have drops we are to start with him. If not, he can get an ear infection. He's kinda congested right now so I'm hoping not. What was the point of tubes if not to protect from ear infections?

While getting out of the car to come in our house, Matthew started with a bloody nose. He was hysterical and refused to let me near as it was dripping all over. EEEWWW! I picked him up and brought him inside and held him down while putting pressure on his nose, etc. It didn't stop bleading all the way for a while. But all was better at supper time and he mowed down on eggs, grapes and tostitos and hummas. I tried getting him and Jon to eat and Matthew to eat something other than breakfast food but it was more important that they eat. Tomorrow they will get a treat of spaghetti and meatballs. I need to go to Dunkin Donuts and get Matthew his strawberry iceing donut with sprinkles as the reward for doing well today.

Long overdue update

This is what is new since adding a new post way, way back last year. Chris’ MRI came back abnormal in the corona part of his brain and his right eye showed an enlarged optic nerve. We were sent to a neurologist. We chose one from Children’s Hospital of Philadelphia. From there wanted us to see a neuropthomologist to check out his enlarged optic nerves, have a hearing test, 24 hour EEG at CHOP, and call Infant Intervention for a screening then we will go back in February and they want us to see a developmental pediatrician at that time.

We did go to the eye doctor and they feel that he does have enlarged nerves but it is a common condition of being a premiee. This can cause issues with his vision so they did a test on him and his vision was normal. YEA!

On to the next thing….24 hour EEG was normal! Hearing test was normal BUT his right ear is blocked. The tube was placed in mid November; we go on Monday too.

The EI screening wasn’t as good as the other things…..they have his cognition at 9 months, his language at 6-7 months, his motor at 10-11 months and want him to have further testing with a Physical Therapist, his self help at a 6-7 month level. We were told they would do the IFSP and the therapies that he will need as soon as the PT evaluation is done. They feel his lower half is too tight and it may be causing him difficulties coordinating his movements.

Chris had his 15 month appointment on the 23rd. He was 25 pounds 8 ounces and 32 ½ inches. He lost weight from 12 months to 15 months. They felt it was a combination of him moving around now and his inability to eat dairy or soy. He goes back in February for a weight check.

The 24th was the allergy dr. His skin tests showed no allergy to dairy or soy but allergies to pets with hair, weeds and dust. They referred us to a GI DR for his symptoms of inability to tolerate dairy or soy.

GI Dr is going to test for a whole bunch of things with a blood test. They do believe he is allergic to dairy and has intolerance to soy. We need to call them with the weight check; they will track things since he dropped on his percentile. We were told to add high fatty foods to his diet to gain weight. This kid has been loving his French fries!

Matthew was tested to see if he qualified for a preschool special needs class to help him with his speech. He doesn’t speak very clearly. He qualified for an inclusion room so he will be going to a regular preschool but receiving speech. They said he was ahead of where most 3 year olds are J

Jonathan and Josh are superb!

We took Jon and Matty to see Santa and Jon told him he wanted a transformer, dinosaurs and a robot doll. Matthew wanted a transformer, a doll and a new baby brother. NO MORE KIDDIES FOR US! WHO ARE WE, THE DUGGARS?

Christmas day and they were opening up gifts saying “Just what I wanted” and “My favorite”!

We had pictures done on New Years Day and are waiting to share. Crazy enough, they weren’t horrible this time.

Instead of putting up a select group of pictures, I'm adding links to photo albums from my facebook page.

http://www.facebook.com/album.php?aid=2014194&l=f936d&id=1287603289

http://www.facebook.com/album.php?aid=2014199&l=c4c97&id=1287603289

http://www.facebook.com/album.php?aid=2014201&l=5fc2e&id=1287603289