April 23 ~ Entry 7 (NDD)

Nathan's Daily Diary - entry 7

Nathan woke up around 7am and took his normal place, watching his normal show, drinking his normal drink. As he watched me get Noah off to school.

Then started out the day by having to take Calahan to his school for a meeting with the Vice Principal. It went well, under the circumstances. Calahan came home with us, if that means anything to you.

After we got home it was time to make some breakfast. Eggos!! So after that Mom was dealing with Calahan a lot and taking care of Nathan & Kaedyn between giving Calahan a list of chores to do. Lunch time came around and it was time for pretzels and peanut butter (he ate okay) …

But we managed to fit some coloring, and some bubbles into the day. Then while Mommy was checking her email while the babies were sleeping, Daddy walked in – EARLY!! Yay!! He had finals so he got done early. Daddy got down on the floor and played with Nathan for awhile, and he did some bubbles too.

Nathan did lots of stuff, like watching the street sweeper going down the street, watching the birds, poking mom in the eye which is one of his favorite things to do. He went outside for awhile with his brothers, to go down the slides.

Dinner time eventually started to sneak up on is, Daddy went in the kitchen to start making tacos and Nathan joined him. He likes to play in the kitchen when Daddy is cooking. He played with the magnets on the fridge and the bowls and snacks on his snack shelf.

We sat down and ate, and he ate pretty well. He had a bath and settled down for bath time. I took his meds into the bathroom and Dennis gave it to him while he was in the tub.

Once he got out, he settled down and wanted to cuddle with Daddy. Pretty soon, he feel asleep around 8:30.

April 22 ~ Entry 6 (NDD)

Nathan's Daily Diary - entry 6

Nathan slept in this morning, if it weren’t for his therapist coming at 8am, he probably would have slept until after. But a few minutes before 8 I went in his room and gently woke him up. He did, so I brought him out the couch for his lounge time he uses to wake up fully. Well, his Physical Therapist showed up and his time got cut. Katy and I talked of all his appointments and everything else.. Nathan wasn’t all that interested in working so we just chatted away…

After Katy left, Nathan wanted to play so we did for awhile. We colored and played with his kitchen. He has been saying “HI MOM” a lot … I love it!! I’ve noticed he’s saying a lot more things now, no one else can understand him – but Dennis and I can, and his Speech Therapist. After a little while he wanted to watch Blues Clues so we did that and sang along with it. He loves to sing along.

We had lunch, he had left over noodles and chicken, and some pretzels. He ate some of it, but he was more interested in getting his cup of milk and laying down.

He napped from about 12:30 to 3 and then got up to play some more. It involved bubbles (his FAVORITE thing in the world) and reading a couple books, pointing to pictures and trying to get him to say words.

Once Daddy got home it was about time for Cal and Noah to leave for awhile. After they were gone we went to pick up a DR excuse for Daddy and then stopped at Walmart to get some stuff we needed (milk, bread) ..

When we got home, Nathan had a sandwich for dinner, picking off the ham and pickles and not really eating the bread. After dinner he got his medicine and played for a little bit before cuddling with Daddy and falling asleep before 9pm.

Daddy said he rolled over looked at him, and then rolled back over and went to sleep. Daddy says he already *seems* as if he's feeling better, now that he's started the meds. He said "you can't claim placebo effect on a 2 year old" ...

April 21 ~ Entry 5 (NDD)

Nathan's Daily Diary - entry 5

Nathan woke up about 7:30 this morning and he did his normal blanket, cuppie, Blues Clues routine.. he had a waffle and was actually up playing for awhile this morning. By 10 am you could tell he was feeling better, so I opened the curtain (and sheet) in the living room and tested the light water, he seemed to do well. He went to bug Daddy in the kitchen while I cleaned up the living room to get ready for his Speech Therapy. When Erika got here, Nathan immediately “assumed the position” sitting down in the middle of the living room waiting for whatever game they were about to play. She brought chocolate pudding, and graham crackers, he had no interest in the pudding but ate some of the crackers. Erika was trying to show him the sign for “cracker” …

After therapy we had some lunch - he had some chicken & pickles - Daddy made chicken salad for him and I but just gave Nathan some chicken… He actually ate all the chicken and some of the pickles.

After that we had to run for Nathan & Kaedyn’s Well Baby Visits, Nathan’s 2 year and Kaedyn’s 6 months a month late (cuz he’s 7 months). Nathan was 16lbs 1oz and 30 inches (rough measurement on the exam table – he was 28 inches exact measurement when the Endo DR did it Friday) … Kaedyn was 18lbs 10oz and 28 inches (rough measurement) … we talked of all the appointments Nathan had and various other stuff. Kaedyn was easy, everything was perfect, nothing wrong, other then him having some Eczema – which he’s had since birth pretty much. Both got shots … Nathan got his HepA and Kaedyn got harpooned 3 times. Nathan also got his Iron checked.

After we did that, they both fell asleep in the van while Dennis and I ran some errands (including picking up Nathan’s new medicine for his migraines), sleeping until we got home. Once we got home it was dinner time, So they both went into their high chairs immediately and we ate. Daddy had made some home made chicken soup and Nathan picked some of the chicken and noodles out. He ate very well for what he has been doing. You can tell that the migraine is over. I gave him his meds, right now it’s 1 mL once a day for the next week.

After dinner Nathan played for awhile, and finally settled down and crashed with Daddy at about 10:30. While playing Nathan was acting a little funny. One of the side effects is dizziness, so we’re wondering. Plus he was just in a goofy mood – not sure if that’s the meds or him being more his normal self after fighting the pain for several days.

(PS - such a weird looking picture, but I catch him smiling so rarely on camera these days - I think he was in the middle of blinking..lol)

April 20 ~ Entry 4 (NDD)

Nathan's Daily Diary - entry 4

He ate some fruit loops for breakfast (maybe a handful), half a hot dog for lunch (the rest got thrown on the floor along with his yogurt drops) .. and for dinner we had cheesey noodles with chicken and he didn’t touch it again.

He has drank 4 cuppies of milk – offered him some apple juice but he wanted none.

He woke up this morning at around 5:30am and didn’t not stop whining, crying, clinging until 8 after his ibuprofen kicked in some. He didn’t want to drink milk at that point, and he just didn’t want me out of his sight (really he didn’t want anything but cuddles). After he settled down some and got his brother to bed for his morning nap, we sat on the floor and played for a little while. He was still very fussy so I broke down and put the sheet over the window to increase the darkness in the living room. Once I did that he was so much better and playing on his own. At noon I gave him lunch and after gave him some cuddles, which he didn’t really want, he crawled up on the couch and wanted to sleep so around 12:30 he fell asleep and slept until 4:30.

He woke up crabby and brought his blanket into the kitchen where I was doing dishes and just curled up by my feet while I finished, crying and whining and hitting my leg trying to get me to stop. Once I did, I picked him up and went into the living room to cuddle with him for awhile. He’s continued to follow either me or his Dad around while we weren’t holding him, just wanting to be cuddled right now. He’s playing on his own periodically, but over all he just wants to be held. After dinner he had a bath and was fine in there, seems that is one of the one places he can seem to relax. He played in his brothers room for awhile after, and I tried to cuddle with him from the time Daddy laid down his brother (around 7) to 9:30 when he gave up on me and wanted Daddy. Going to sleep is 98% of the time with Daddy because that is their thing… and he wanted Daddy tonight. He went in the hallway 3 times searching for where Daddy was, and the last time he sat there going “Da-da-da-da-da” as he started to cry. So I went and got Daddy and once he was in Daddy’s arms, it took less then a half hour for him to fall asleep.

He was talking a little bit today. Repeating words, even saying some on his own, not that anyone else would even remotely understand them because it’s still humming… but he did say “Thank you Momma” today. Melts my heart!

April 19 ~ Entry 3 (NDD) HAPPY BIRTHDAY NATHAN!!

Nathan's Daily Diary - entry 3

HAPPY BIRTHDAY NATHAN!!!

He got up around 7:30 and was fussy – he did his normal morning routine (couch, blanket, chocolate milk, Blues Clues until he fully woke up) … he played with his new Kitchen for awhile and his other toys … he was dancing in the bubbles and had fun, and around 11pm he got super crabby and wouldn’t stop clinging and covering his head with his blanket. We gave him some ibuprofen and he was asleep shortly after. Again he ended up sleeping through lunch and well into the afternoon, not waking up until after 4:30 right when it was time to eat.



He came into the kitchen and was put into his high chair, he was very miserable. He wouldn’t eat, and was hitting his head repeatedly, and holding his head. He was whining and fussing during dinner and didn’t stop until we turned off the lights for him to blow out his candles. Then continued to after the lights were back on. So we let him down and into the living room (where it was darker cuz there were no lights on) and he was fine.




We settled down for Family Movie Night and he cuddled with Daddy, and after awhile, got down and played after it got dark outside. We gave him more Ibuprofen and he cuddled with Daddy falling asleep around 9.

April 18 ~ Entry 2 (NDD)

Nathan's Daily Diary ~ entry 2

Woke up grouchy but once he laid on the couch with some Blues Clues playing for awhile, he was up and playing in the living room. He had a waffle for breakfast.

We spent some time outside, Nathan loves to slide. It was very sunny but he won’t keep sunglasses or a hat on. He kept going down the slide over and over and over like normal, going back and forth between the big slide and the small slide.

He started to act fussy so I brought him in and he feel asleep, sleeping through lunch and almost until dinner. Once he got up, he wanted cuddles with Daddy for a half hour, and then we had dinner (steak shish kabobs and baked potatoes) … Nathan picked at his food, he ate some of his steak but had trouble chewing it all the way, but he did okay. He tried some grape tomato) After dinner he got a bath and was up until around 10:30.

April 17 ~ Entry 1 (NDD)

Nathan's Daily Diary - Entry 1

Today we had ample appointments in Marshfield. Nathan had an MRI. Saw the Neurologist and she asked us to start keeping a journal of Nathan’s days. She agrees that since the MRI showed no change in the Dandy Walker and no sign of hydrocephalus that we may be right in our assumption that he is having migraines. She is starting him on a medication. Once we get it (it had to be ordered) we will give him a tiny dose once a day for a week, then twice a day for a week, then finally three times a day…

Nathan handled today pretty well, with both Dennis and I here together we could each concentrate on one of the boys when appointments weren’t going on.

Nathan started to show some signs of possibly having a migraine start when he started seeking out the darkest part of the room. He was at least suffering from light sensitivity, and was very over tired. He did not eat anything really at all. A couple bites of graham crackers, that was it. He was hungry before bed, so we gave him a hot dog and he ate some of it. Still just not eating a lot. He drank some water today and 3-4 cuppies of chocolate milk.

After eating dinner he got a bath and was asleep by around 8pm.

He slept poorly, around 2am he started stirring and crying. Gave him a cuppie of water and ibuprofen and he settled down.

April 17 ~ Doctor Appointments

MRI, Neurology (all Nathan) … Endocrinology added (Nathan)

Sorry I didn't update right away last night (written 4-18).... I was so tired :( I still ended up being awake until almost midnight.

Anyway .... we left the house at 6:45 am ... getting to the clinic at 8:30...walking back out the door at 5pm, getting home at 7pm. Oye!

We got there and Nathan got the Cloral Hydrate ... and thankfully did NOT need an IV this time. It took awhile for him to go to sleep but he finally did. So off to the MRI he was whisked while Dennis and I got sandwiches - then went back up to the room. It wasn't very long after we got back up to the room 40 minutes later or so that he came back into the room. While the nurse was doing something, he woke up - hates being messed with. She had put some patches on his arm to help numb the skin just incase they had to do an IV and for the blood work that had been ordered. So after she gave up and realized he wasn't going to pass back out, Dennis and I got up an were talking to him. Lab came up and Jenny (our sedation nurse) asked if they had all the orders. Apparently it wasn't just genetics ordering tests, but neurology too. Then it came to light that - our appointment with neuro had gotten switched from 1:45 to 11:30 ... well... Nathan was still in the MRI at 11:30... so since he didn't show, and they didn't call (not knowing that the appointment had been switched) ... then he got marked as a "no show" and the labs were taken out. (rolling eyes, what a mess) ... so after we got all that situated, Nathan got poked AGAIN for the neurology labs.

After Nathan woke up, we were basically told we'd have to go back to our original appointment (the DR had a conference or something until 2) ... so we walked up and down the hall outside of Neurology while Dennis sat in the playroom with Nathan ... Kaedyn was tired, was the only way I could get him to go to sleep... so after he did - it was a little bit before we got called back.

Basically - Dr. M said that the MRI came back good - there was no signs of hydrocephalus and his Dandy Walker was still stable (whew!) but when she had run the labs, checking his hormones and other stuff... his thyroid level came back showing hypothyroidism, but since it was just one blood test, and slightly elevated, she wasn't sure if he actually had it and it can be a sign of migraines (which we have been suspecting) ... so she decided that she wanted us to see the Endocrinologist right away and talk to him about the Growth Hormone and so he could keep an eye on him starting the migraine med that she was going to start him on. She decided to go with a med that one of the side effects is to make you more hungry, and hopes he gets that side effect. He's starting out at a tiny bit once a day for a week, then the same tiny bit twice a day for a week, and then the following week doing it three times a day which is where we'll be at. She wants me keeping a migraine diary for her too, for him. So I asked her about my suspecting Autism and when I handed her the list I had made up, she nodded in agreement and said, she agreed and he is showing a lot of key symptoms. So she was putting in for an assessment at the Autism clinic - which will take a few months to actually happen. So I'm going to keep that diary along with his migraine one. She called Endocrinology and we couldn't see him until 4pm - so, we were stuck there for awhile longer.

Made some phone calls and then settled down for another long wait. Once we got called back, he did a bunch of measurements said that even though it doesn't look it, his head is larger for his frame and he really does fit the symptoms for Russell Silver Syndrome (which is one of the things that genetics is testing him for but we won't know the results to for several months) ... anyway - he said based on what he was seeing, he thought that Nathan would be a great candidate for Human Growth Hormone. He wants to do further testing for the thyroid issue to see if that is a true thing, or if it was just a fluke today... and some other testing, and then he thinks in about 6 months, odds are, we'll be starting it.

HGH is a daily injection so that means that Dennis and I will have to learn to give it to him.

At this point..... I really just want to know what else this poor kid could have wrong.

And it's driving me insane that when I was pregnant with Noah and we found out about his MT16 I was told he would be so mentally and physically delayed it wouldn't be worth it, and was basically made to worry - and with Nathan, when they discovered the cyst and 2-vessel cord at the 20 week ultrasound, they told me "not to worry" that "everything would be fine" ... and now he has this coming up and that coming up and more diagnoses and more things going on then Noah EVER had. Noah was in the hospital more, but I feel so bad for Nathan.

When we tried to pick up the medication for his migraines - we were told they had to order it, so we asked them to send the prescription to the pharmacy at home, and we'll go through them.

Basically - that was it. By the time all that was done I had two very tired babies...

April 16 ~ Doctor Appointments

Genetics (Nathan), X-Ray (Nathan) & Orthopedics (Nathan & Noah)

It's been a long day and only saw 2 doctors! Genetics ... was told that they are thinking Nathan may have Russell-Silver Syndrome (type of dwarfism, get as tall as 4 foot 11 or something like that) ... on top of that, saw the Orthopedic and was told he has Scoliosis (although minor) – I saw the x-ray myself and I could see it – it’s slight but he definitely has the curve to his spine ... and if Noah's legs/feet don't get better by the end of the year, most likely he'll have to go in casts for 3 weeks to stretch out his tendons, DR told us to stretch him out at least once a day. Great… I get to inflict pain on my son everyday – does he know how hard it is to do that? ... it was just good news on top of good news on top of good news today!

Genetics is running a UPD test & FISH test ... along with Autism blood work (yes there is blood work now, look down and read the article about the link to chromosome 16) ... the blood work doesn't ALWAYS show it but it's a step I guess.

Ugh ...

I just lost all my side info - I was playing around with different templates and ugh - I don't like any of them... so I ended up losing everything in the process - fun times.. (slowly getting it fixed)

Long Time........

It has been a LONG time since I updated, but I will be today. There is a lot of stuff I need to update on Nathan, a little on Noah... and some stuff to add in my info off to the side.

Of course, I had my youngest - I'm no longer pregnant and Nathan is no longer *waiting* to be a big brother!!

Kaedyn Phillip Russell arrived on September 9th ... he came into the world at a whopping 8lbs 3oz and 18 1/4 inches. He was very colicy at first, and has since grown out of it. The last four months have been wonderful (he's 7 months old now!) ... and he's the BEST baby. It took a lot of time for me to adjust I guess. But now I'm hoping to get back into the swing of things.

Kaedyn - btw - is 100% healthy!!!

Nathan has had a lot of DR appts lately... and I need to update on everything going on with him. It seems that the diagnosises don't stop, and a lot of possibilities are hanging over our heads!!

Be back after I get the babies fed and loved :)