57 days until wish trip to Disneyland

[tastycollector]

Trying out to see if my signature worked

 

[jessica52877]

It worked! Whoo hoo! Now I can find you so much easier!

 

[tastycollector]

Well, Dev got his first hair cut in 3 months. He was due one when he got sick. He looks like himself again. DD9 got a trim. She is waiting for Dec. for the Locks of Love event at our cutting place. It will be her 2nd major cut. In Aug. 2008, she cut off 13 inches. It was her 1st real cut since birth.

I can't wait to go shopping with my princess this weekend! It will be great to have some special time with just her after the last 2 months of sick little brother.

 

[tastycollector]

Tomorrow we are off to see the urologist and nephrologist. Hopefully they will gives us the all clear at Dev's check-up. Then on Tuesday, Dev gets his IVIG.

Just 3 weeks until school gets out.! Then the troops will want to be entertained all day long. Dev may have to go to summer school to help him catch up. We should find out soon.

 

[tastycollector]

Dev's kidneys are growing and function with no visible side effects from the infection! They also said that his bladder has not grown any more! Hurray. Dev has a mega bladder that is already 900ml at 7. This means no surgery this summer to decrease the size!!!!

We can really start planning!!! I have to get DD9 to try on her clothes before our shopping trip on Saturday so I can figure out what she needs. I know PJs are on the list.

 

[tastycollector]

Shopping was fun. DD9 got some really cute clothes. She will still need a bathing suit. We had a great time together. We also had a family picture made today. It was the first one we have had in almost 4 years!

 

[jessica52877]

The family picture sounds really nice.

 

[tastycollector]

Looks like Dev is crashing again. He is have trouble breathing...may be croup...we will see how the night goes.

 

[maroo]

I hope you guys had an OK night!!!

We are praying for you guys!

 

[tastycollector]

We are hanging in there. We are at home and doing what we can to make it until treatment day without going to the dr. office again. The breathing treatments and showers are helping along with his vest treatments. Summer is supposed to be his healthiest time of year, but no so much this year.

 

[tastycollector]

Well, we are sitting at the hospital waiting to start treatment. It took nearly 2 hours and multiple sticks to get his IV started. I know the dr. doesn't want to put a port back in because of the blood infection, but 2 hrs. of crying was really hard. ... Doing this inpatient is much harder than in the office. It takes alot longer...change of insurance is to blame.

 

[maroo]

Well, we are sitting at the hospital waiting to start treatment. It took nearly 2 hours and multiple sticks to get his IV started. I know the dr. doesn't want to put a port back in because of the blood infection, but 2 hrs. of crying was really hard. ... Doing this inpatient is much harder than in the office. It takes alot longer...change of insurance is to blame.

This drives me crazy!

I am so sorry it is taking you guys so long and that he is struggling so much!

Are you guys having to stay overnight to get the medicine because the insurance won't pay right as an outpatient in a doctor's office? This is a problem we are running into, too. And it is SO STUPID because the insurance company ends up spending a lot more since it has to be done inpatient?!? And we wonder why the cost of healthcare has gone up SO much in this country?

Anyway...that is a major issue for us here, too and it really gets me irritated!

I hope you guys have a better rest of the afternoon and night! Let us know how he does!

 

[tastycollector]

We don't have to spend the night, but they have to admit him...get a room... wait for meds...it is an all day event! The medicine takes 2 1/2 hours to run. We use to be in at 8:30 and done by lunch...this included accessing his port, blood work, the IVIG treatment, and seeing the dr. Today we got there at 8:30 and it was well after 4:00 before we were done. Then we hit rush hour...we live about 30 miles from the hospital and that makes the drive really long!!!Traffic!

Anyway, I don't know how long we will get to be home...

Dev's fever is 102.9 and climbing. It may be worse than the croup... H1N1 was mentioned. I hope we can make it through the night and through my DD9's first orthodontist appt. ! She is missing some upper adult teeth...family trait on her dad's side, but they are front teeth...and it is effecting her eating. She thinks braces would be SUPER COOL. To be young and not have a clue ...

I don't know how my troops would handle another major hospital stay right now...
I don't think they would do good if we had to move the trip again either...

 

[maroo]

We don't have to spend the night, but they have to admit him...get a room... wait for meds...it is an all day event! The medicine takes 2 1/2 hours to run. We use to be in at 8:30 and done by lunch...this included accessing his port, blood work, the IVIG treatment, and seeing the dr. Today we got there at 8:30 and it was well after 4:00 before we were done. Then we hit rush hour...we live about 30 miles from the hospital and that makes the drive really long!!!Traffic!

Anyway, I don't know how long we will get to be home...

Dev's fever is 102.9 and climbing. It may be worse than the croup... H1N1 was mentioned. I hope we can make it through the night and through my DD9's first orthodontist appt. ! She is missing some upper adult teeth...family trait on her dad's side, but they are front teeth...and it is effecting her eating. She thinks braces would be SUPER COOL. To be young and not have a clue ...

I don't know how my troops would handle another major hospital stay right now...
I don't think they would do good if we had to move the trip again either...

Have they tested him for H1N1? That doesn't sound like fun at all!

I remember when I thought braces would be cool! To get all of those cool colors like my friends! And I didn't really mind them so much.

Keep us posted about how Dev is doing!

 

[tastycollector]

Well, we went to the pedi on Wed. afternoon. No flu, no strep...so we got to go back to our favorite place-hospital jail, as Dev calls it! His white count has shot up 9 points in the last 24 hours, blood pressure is low, dehydrated, and still has fever...we are playing hurry up and wait on the blood cultures...

 

[tastycollector]

Well, we went to the pedi on Wed. afternoon. No flu, no strep...so we got to go back to our favorite place-hospital jail, as Dev calls it! His white count has shot up 9 points in the last 24 hours, blood pressure is low, dehydrated, and still has fever...we are playing hurry up and wait on the blood cultures...

 

[tastycollector]

Home again...the blood culture is negative at 24 hrs., but the dr. is not sure that it won't be sometime during the 6 day growth period...

 

[tastycollector]

Only 6 1/2 days until school is out for summer! I'm trying to get as much shopping done as possible before the kids get out. Taking Dev into stores is not something that we can do right now, Wal-Mart and the grocery store are way to germy.

I found Dev a Lego Darth Vader t-shirt yesterday. I'm hiding it as a suprise for the trip. He loves his lego Indiana Jones and Star Wars Wii games. He thinks that it is great that Indiana Jones and Han Solo are the same guy!

Okay, I think I have lost my mind. I have just agreed to send DD9 to OK for a trip with family. She leaves on June 23rd and we go to pick her up in Dallas (4 hours from home) on the July 6th. We leave for DL on the 8th. I don't have flight info or anything for us yet. We would let her fly back, but until June 23rd she will have never flown before. Her grandma is flying up with her, but coming back at a different time. She is so excited about going ! DD9, her aunt, and cousin are going on a "Little House on the Praire" trip. The girls have been planning it since last year. We thought we would be okay, because our wish trip dates were in May. Then Dev got sick and we had to change the trip. Because he missed so much school and is having trouble reading, he will be attending special summer school tutoring. The new trip dates were set around when he had a break from school. I completely forgot about the dates on the "Little House" trip. Just a little crazy.

I found a great place to print out kids Disney travel journals! I secertly put one together for Dev and DD9. It is kind of a fill in the blank thing with Disney characters, etc. on the pages. All I did was print them off from the website, punch holes in them, and put them in a plastic pocket folder with brads. Both the kids have been wanting a way to tell about their trip and this was simple and cheap! BUT, they look soooo cool! I even found little trivia quizes for both parks.

Tomorrow is a big day around here. Dev goes and launches rockets with his classmates and DD9 gets 4 teeth pulled. It should be interesting. Hopefully this is the only dental work she will have to have before our trip. Her baby molars are not coming out and her grown-up ones are coming in. Maybe she won't be so GRUMPY for the trip this way. We are trying to decide about having Dev's teeth checked before we go ??? I don't know that I want them touching his mouth because we are still not certain that this is not one of the reasons for one of the blood bacteria. The docs also have not completely ruled out endocarditis. Not the acute form, but the other that hides. This is why we were back in the hospital last week. We were hoping for regular flu or strep. No such luck. We spent three days in the hospital last week getting IV meds. The fever spikes are gone again. The docs did say they could hear Dev's murmur again. We were told it was better after the last infection, but it seems to be getting worse again...

Well, the stores will open soon and I have to catch up the dishes and laundry before I venture out...

 

[tastycollector]

Well, DD9's teeth are out! She did great! The toothfairy brought 8 Disney trading pins last night for her. She was super excited this morning.

 

[tastycollector]

Jill (Dev's wish coor) called today she is going to be scheduling our flights this week. We are getting close. Jill said that we should have our plans soon.

DD9 leaves in 3 weeks for OK. We will pick her up the day before we leave for DL!

The summer is getting packed and the trip is closing in...