SNOW, Lots of SNOW!

The past few days we have been hearing predictions of a pretty significant storm heading our way. I have been hoping that the weather people would be completely wrong (I do not like snow), but this time they were very correct! The last accumulation predictions we have heard are saying we might get up to 2 feet of snow! This morning we woke up to already having about 5-6 inches and now we are up to 8-12 inches depending on where you look. The wind is pretty strong with gusts up to about 25mph so there is lots of snow being blown around which makes it hard to say exactly how much we have. The boys have been asking to go outside all morning so we bundled up and headed out. Zak loved it and ran around (falling a lot) and playing with the snow. Ryder is definitely more like me in the snow! He just stood in 1 place and would on;y move if we held his hand and pulled or carried him. Ben had to shovel the sidewalk around Ryder because he just wouldn't move!

Zak shoveling

Ryder telling Ben where to walk
Zak enjoying the snow

Tackling Ben

Zak cleaning off the car

Zak cleaning the car

Ryder bracing for the pile of snow Ben is throwing in his direction

Zak trying to hug Ryder

(or trying to push him over)

Ryder stood still for so long that I was able to get some great pictures of him

Looks like a blizzard, but just Ben throwing snow

Ben shoveling around Ryder

Zak running around with his tongue sticking out

One of Zak's many falls!

Ryder looking up in the sky

Ryder

Zak

Ryder playing when we first went out

Robin seems to like running around and playing in the snow, but Batman is not a fan at all!

PS- I am loving my new camera!

Reindeer Games

Last night my mom told me about some cute stuffed animals at CVS. They had all 9 of Santa's reindeer! Of course today I had to go and see them and ended up walking out of the store with all 9.

Bathtime Pictures & More

The boys have been really trying to boycott nap time again. Zak's newest way to entertain himself (and Ryder) during "nap time" is to re-arrange the furniture in the bedroom! He now loves to move the mattresses around the room into various places. Some of these places include: in front of the door so I can't get in, wedges against the bed and dresser to make a ramp up to the top of the dresser, and in the corner with Ryder sandwiched in between them! Tonight Ben put some bungee cords around the mattresses and bed frames in order to try and make it impossible for Zak to move them...hopefully it will work. Here is a picture of what their bedroom normally looks like after "nap time"...

Batman & Robin

The boys cuddling with me watching The Little Mermaid

Thanks to both my mother and Ben's mother the boys have a new obsession...singing and dancing stuffed animals! They sure do get annoying after a little while. And it really can cause me to get a headache when Zak goes down the line and turns them ALL on at the SAME time!

And now for the really cute bath time pictures that I took tonight....

Some of Ryder's many faces

A few of Zak's many faces

They love bath time!

Tonight after bath time we put the boys into the pajamas and headed to Target looking for a solution to their nap time antics (we decided on the bungee cords). They were so cute with their pj's on and crocs!

Ryder having a tantrum

On a side note...the boys woke up this morning still not feeling well so we didn't go to Ryder's class today. Hopefully they will both be feeling better by next Wednesday because I am really looking forward to going to his class. Both of his therapists called out sick on Tuesday, but we have re-scheduled the special educator for Friday and the speech therapist for next Wednesday. The occupational therapist is going to come on Tuesday afternoon because we are having some eating issues with Ryder again. I also talked to one of the genetic counselors yesterday who told me that the paperwork for all of his testing has been passed on to the clinic coordinator so I should be getting a call soon to schedule all of them. She also explained a little more in-depth what the testing would be looking for which helped me to better understand the need for all of the tests. Also, she explained that diagnosing Ryder is difficult because they are unable to automatically rule out all of the "female" disorders/syndromes since he does have the Klinefelter's which means he has the 2 'X' chromosomes giving the possibility for him to have both "male" and "female" genetic conditions. The actual diagnosis is not our true concern, we just want to find out if there are any other therapies or treatments that might help Ryder in the long run.

Random Pictures

I have a few pictures of the boys from the last few days that I have wanted to post so here they are.

Zak with his snowman purse

Ryder sitting on Robin

Ryder pushing the cart at Target tonight

Don't you love his outfit?!

Ryder not feeling too good over the weekend

Playing basketball on PS2

Genetics Appointment

Last night Zak spent the night with Nana & Poppy since Ryder and I had to leave the house around 7am for his appointment at Johns Hopkins. We made it there without getting lost and right on time. I always know there will be a long wait when we go to any appointment there so I was not surprised that we didn't go into an exam room until closer to 9:45am or so, but once we were back there we were seen quickly.

First the genetic counselor came in and talked about any changes/concerns have occurred since our last appointment. She also went over the results of the tests they had requested after the last visit (MRI, hearing test, full body skeletal survey). Then she left the room to "update" Dr. Hamosh with everything. A few minutes later both came into the room and Dr.Hamosh started her full exam.

A few things that "concern" her included some of his facial features (lips, nose, eyes, teeth), sweet smell of his urine, delays not usually associated with Klinefelter's Syndrome and his recent regression in certain skills. She is also concerned about his lack of weight gain.

She had a group discussion with some of the other doctors in the office and they all came to the conclusion they he has something else going on other than the Klinefelter's Syndrome. They can't point their finger on it so they want to run more tests. These tests include:

- Blood work (We had done at the appointment)
- Urine Sample (Have to try and get this at home and take back)
- MRI
- Hearing Test
- Vision Test
- Kidney Scan (Because of the smell of his urine & the hypospadias)
- EEG Test (To rule out seizures)
- Autism Testing at Kennedy Krieger Institute (There is a big link between genetic disorders and autism in addition to some of the "signs" he is showing)

I think that is all of them, but I might be forgetting something. I will be getting a phone call to schedule all of the tests. Dr. Hamosh wants to see Ryder back in 6 months, but if she gets results back that need to be discussed sooner she will call and set up an appointment.

Now we are playing the waiting game once again....

Long Night

Yesterday Zak has a runny nose and hoarse voice, but we didn't think much of it. Then last night he started to cough a little, but nothing too bad or uncommon for him. Around 11:30pm I heard him coughing really bad and it was a cough that I have never heard before. I went into his room and he was in a major coughing fit and was having trouble breathing. Ben and I immediately gave him a breathing treatment with the nebulizer which helped him a good amount. At that point he was still coughing really bad and just didn't feel good at all. Ben and I decided to let him sleep with us since we knew he was having breathing issues. Needless to say, it was a very long night!

This morning Rich came and picked up Ryder for a bit so I could take Zak to the pediatrician. They did a rapid flu test which came back negative. Then she listened to his lungs for a while. In the end she diagnosed him as having croup and pneumonia. She said the croup is viral, but the pneumonia had a 50/50 chance of being viral (RSV) or bacterial. So she prescribed him antibiotics for the pneumonia and an oral steroid to help with the swelling in his airway & lungs which should help with his breathing. Rich is on his way to bring Ryder back home and Ben is going to pick up Zak's medications on his way home from work. Our goal now is to try and keep everybody else in the house healthy! If these last 2 months are any sign of how our winter is going to be then I am not looking forward to it. Zak has had breathing issues twice and the flu already. I know he has a lack of immune system, but come on....

Here is Zak with his best friend during the winter....

On a side note, Ben is a little disappointed. He was offered a ticket (transportation, food, everything) to go see the Army vs Navy football game tomorrow, but I already had plans for the evening so he isn't going to be able to go. All of the people who we would normally ask to watch the boys are either going to the football game or going to be with me at the basket bingo I am going to tomorrow evening. I do feel bad because he has never been to a football game, but I also have had these plans for a week or so now. Maybe another time in the next 25 years he will have another chance to go to a football game...he did tell me if it had been a chance to go see the Redskins play I would have been out of luck and stuck at home with the boys!