Day 7 and we're FINALLY home from hospital

Today, (Tuesday) we finally made our way home. We are on steroids and albuterol treatments three times a day for the next week but by golly we're home. Now its time for me to get the house back in order after a week away....ugh!!

Here's one last photo of Caleb rocking in the chair before we left





Glad to be home!!

Day 6... one down, one more to go

Tonight Isaac got to come home at 8:30pm. He had to be off the oxygen for 24 hours before he could be released and the doctor felt bad releasing one and not the other, but he had not reason to keep Isaac. So Tom took him home and let him sleep in his own bed and then brought him back in the next morning.

Here are some photos from day six:

Both boys IV's stopped working today so they were free to get out of the bed and put on their shoes and play on the floor for a bit. Here's Caleb reading the book "The Wheels on the Bus"


Here's Caleb asking to watch Blues Clues for the 30th time in a week:



Here's Isaac saying his good-byes to brother for the night, he has that look like YEAH I'm outta here:



Here's Isaac blowing kisses before they left:

Day 5 in hospital

Well today has gone pretty good. The boys are both eating and drinking better, they are playful and back to hummming all the time. This is something I actually forgot about. They are very vocal all day long either humming or singing and I haven't heard them for a few days, so today is an indication that they are feeling better. The doctor came in today and said he expects another day or so for discharge. They will be discharged when they can sleep unassisted by oxygen for a whole night. Doctors had their level requirement set at 92 for discharge and we've asked them to take it down to 90. So we're hopeful that tonight is the night. C'mon boys!!!

One thing Tom and I noticed today is how VERY observant both twins are. When a nurse comes in the room they start scratching their ears, which they do when they are upset but when they put on their rubber gloves they throw a fit. They KNOW they are coming in to do something to them. When the respiratory therapist come in to give them a breathing treatment they throw a little stink but they get over it pretty quick cause they know they are just getting their treatment. When a cleaning lady comes in they are social to her and dont hardly notice her, but when she puts on her rubber gloves to remove garbage or diapers they start crying... I'm actually really proud of them, this is a great thing :)

Tom and I enjoyed a day with them playing and being silly. I took lots of pictures today and made a little montage to share.

Make an on-line slide show at www.OneTrueMedia.com

Hopefully tomorrow I will be describing our discharge.

P.S. Please keep Elijah in your prayers tomorrow I am leaving the twins here at the hospital with my mom most of the day so I can take Elijah back to the pediatric dentist in State College to finish a root canal they started three weeks ago. He's been in alot of tooth pain lately and its a different tooth than the one they are planning on working on tomorrow. We'll see what comes of the visit.

Day 4 in hospital....

Today was a better day. Boys watched ALOT of Dora and Barney, they have a much more productive cough and they seem to be eating and drinking a little more. Today was 80 degrees outside so it was hard to see the nice weather and be cooped up inside. The poor lil guys keep signing "car" they wanna go home. We got them out of the cribs today for a few minutes and walked them around the hallways in the wagon, so it was nice to do something with them today outside the room. Camille and Elijah stopped in for a visit and later Tristin came and played with them too.

Can I just say what wonderful friends and family I have. My friend Kristen has helped us so much with the older kids and my mom and sisters have all pulled together and been there for me when they can. It gets really boring sitting in the same little room for so long with nothing to do. I love the visits!!!

Here are some photos from today:

Wagon ride to visit Big Bird


Caleb's crabby face


Watching TV together


Visit from Camille and Elijah (Elijah spilled drink right before photo)



Caleb's nap

Day 3 with twins in hospital

Today we are trying to keep the boys entertained a little more. They are feeling better and wanting to get down and run, which we cannot let them do because they have IV's in. So we have been confining them to the highchairs and the cribs and watching LOTS of Barney, Blues Clues, and Dora the Explorer.

This is breakfast today, bless their hearts they both use their right hands more than their left for eating and they don't have the option.




And drinking out of sippy cups takes a little more thought and motivation:



Here is Isaac being funny with the crib today. I made sure housekeeping cleaned the cribs extra good since they're putting their mouths all over it....YUCK!!





And both boys right after having blood work and ready for a nap:

Isaac


Caleb



So we're still here, they are doing better but not quite enough to come home yet, we're hopeful for tomorrow and at the latest Sunday. They are eating and drinking better and their oxygen levels are right at 89 - 90 and they need to be 92 to come home.

Tonight Tristin is going with a friend of her's to a church youth group trip to a lock in at a movie theater, how fun is that!!! All the popcorn and soda she wants and movies all night long.

Hospital stay x2

The twins have been fighting off a really bad cold and fever for 5 days. On Tuesday I took them in to be check out and they were both given a shot of steroids in the doctors office. We were told to come back the next morning for another shot and to monitor their progress. When we went in Wednesday they had very low oxygen levels (88) and we were given another shot and admitted to the hospital. Here is how Isaac spent most of the day yesterday:



And here is Caleb watching TV, which is all you can do when your three and hooked up to an IV:



Today started out about the same as yesterday, but as the day went on I saw the spunkiness come back into the boys. They were being silly and restless and kept signing car, meaning "get me outta here" Here's some photos from today:








So we're on the mend. No pneumonia, No RSV, just a virus that attacked the lungs and flared up their asthma. Its 10:00pm and they are both asleep and both needing the blow-bye oxygen so that's an automatic another night stay, but I am hopeful we will be home Saturday. Thank you for all the positive thoughts and prayers, keep them coming we would love to make it home for the weekend to enjoy the summer like weather here in PA.

Spring on the Farm......is stinky!!!

I do love the first really nice day of spring. Today was it for us, temperatures in the high 70's, nice and sunny, little windy but overall a great spring day. I caught up on laundry by doing 6 loads, we got the car cleaned out, kids dug some nice holes in the yard looking for worms, Tristin sat out on the deck and read Twilight and got a sunburn, twins are both sick but went out for a bit for some fresh air, Tom took older three fishing tonight after dinner, it was just a great day.

The worst part of spring for me is when the farmers come and plow and poop on our yard and prepare to plant the corn. It is midnight and I'm still smelling cow manure in my house. Stinky..Stinky..Stinky.. This will last for about two or three days, until we get some rain. I won't hang my clothes out, don't like to open my windows, and tend to burn extra candles over the next couple days. Guess one of the many benefits of living on a farm :)

I know you can't really see this photo to well (took with cell phone) but we had two big trucks and one big tractor plowing, spreading manure and finally planting corn today. Its fun for the kids to watch the farmers in action, ok and for me, but the few hours of stink afterwards is just plain yucky!!!


But the positive of all of this is that we are due for some nice weather soon, we have a nice big backyard for kids to play in and in August we will be eating the best corn in town.

Fever and Croup

This should prove to be an interesting evening, the twins are both fevered and croupy already and its only 9:00 pm. Guess I should have tried to nap with them today.

All in a day at the dentist...

Today we took the boys to their first dental appointment. I have to say I was a bit nervous due to the fact that they are both biters and when the pediatrician even tries to put a tongue depressor in their mouth to look at their throats he cannot even pry their teeth apart. That is why the Down Syndrome Clinic referred us to the pediatric dentistry at Children's Hospital in Pittsburgh. I knew they would be used to children who didn't want to corporate and I have to say I was pleasantly surprised by the whole visit. They DID NOT enjoy it whatsoever, but the survived it. Poor Caleb screamed so hard and long that he broke several little blood vessels in his face, he looks like he has a bad rash on his face tonight. He's missing two teeth on the top and his bottom teeth are so crowded that it will definitely be an issue when his adult teeth come in, but he had no cavities. Isaac was a little more feisty, as usual, (he doesn't even let me brush his teeth most days) and he too is missing the same two teeth on the top...identical twins.. and the crowding is an issue. Isaac, however, has two cavities that need fixed. Due to him not sitting still and tolerating them working in his mouth they will have to sedate him to do the work. This is something that we were expecting to happen, so much so that we will coordinate plastic surgery coming in to fix a scar on his neck and his colostomy scar on his tummy at the same time. Two minor surgeries under one anesthesia, works for me!! This won't happen for about three months and I'll update when we are about to have it done.

While Tom and I and the twins were in Pittsburgh today the older three kids went upto Great Grandma's house to keep her company and spend some time with her. She is still really sad about Grandpa's passing two weeks ago. Anyway, Tristin had to make a pie for her math class at school tomorrow and Grandma and her made one together. It turned out great and they both were proud of their pie making adventure.



Because we were in the car all day the twins both slept most of the day, so I knew we were in for a longer night with them. As I was getting everyone else to bed Isaac decided to find a purple marker and get creative with it. Thankfully he just decided to use himself as the drawing board this time. When we put him in the tub to clean him up it was like we were coloring Easter Eggs all over again, the water turned a pretty pretty purple color ;)



My little Isaac, he'll keep me on my toes for sure!!! God Bless Him

I haven't had much time to sit down and blog lately. Lots of stuff going on, but today the TSS was working with Caleb and he was making some sounds (mostly just dadadada...) and was signing a bit for her so she grabbed her camera and made a video so she could show him what he's doing and how he sounds. He got a real kick outta it and so did I.

Unfortunately I cannot figure out how to add this video, but it was still worth mentioning.

Both Caleb and Isaac are starting to make a few sounds and they are both still learning new signs, all totaled I'm sure they have 50 to 60 signs pretty well mastered. This pleases me as I have a form of communication with them, but as their developmental teacher says, that in a way is yet another handicap as not everyone knows sign and the boys think they should :) Again, the boys are teaching so many so much, if you don't know how to sign, they'll sure teach you how to sign crackers and milk real quick!!!!

I called the pediatrician today and we got a perscription for outpatient speech therapy. We go for our evaluation next Tuesday. I'm anxious to see what the recommendation will be for them. I intentionally wanted to wait until after winter so I didnt have to bundle them up and take them out in the cold weather any more than I really had to. I dunno, they're calling for snow today April 15th...think I'm safe?

Happy Easter

Eggs are made, baskets are hidden, time to celebrate with family tomorrow but I wanted to wish all of you a very Happy Easter Holiday.

Naptime!!

Today is Good Friday and the kids have the day off school. Usually when the older three are home the twins tend to get a bit off schedule with their naps and stuff. Well, today my nephews Noah and Eric have come over to spend some time with the kids and play the Wii and just have a good ole time. I fed them lunch and they went about their playing, then I hopped on the computer to look around a bit and I realized that it was almost 2 o'clock. Yikes, time for naptime (about an hour past) I go and look for the twins and they have closed the door to their room? Hummmm? So I quietly open the door and see what they're upto and I find this:



Absolutely hysterical!!! They emptied their dresser, which is a daily thing for them these days and it must have pooped them out that they laid down and put themselves to sleep. They never just go lay down, so this is encouraging for me for sure. Oh my I'm still laughing about this.....

JCARC Run/ Walk for Someone Special

Sunday April 5th was the 30th Annual Run/Walk for Someone Special in Sykesville, PA. This is an event I remember walking in when I was in elementary school way back. I honestly have to admit I didn't even know this still was going on until recently when I started taking an interest in my local ARC. I was very excited to attend this with my family and I promoted it as best I could to get other people to attend.

Now, I'm certainly not taking the credit for this, but this was a record year both for attendance and for money earned. This is fantastic!!! I am so encouraged to promote the ARC and the activities they provide to local people with disabilities. I honestly am a bit ashamed I did not know more about them before now. This will be my mission now (after being elected their Executive Director recently) to spread the word and to "SPARK the ARC" here in my area.

For those who know nothing of the Arc. There is an Arc of the United States, you can find their website here: http://www.thearc.org Then you can click on the tab that says find a chapter and your state and from there you can see if there are any local Arc branches near you. I am still learning what all they do and how they do it, but now I know there IS help available to those in need.

Arc used to be known as the Association for Retarded Citizens, but now to be politically correct they are known as Advocacy and Resources for Citizens with Intellectual Disabilities.

Especially if you have a child with Down Syndrome, Autism, or any other Intellectual Disability I ask you to find your local branch and become a member and seek their support and offer your time and knowledge to those who may not have the resources you do. I myself, am very excited to get involved with my local community and hopefully provide things for the kids to do. My first plan of action is to start a Parent Support Group which will begin on Tuesday May 5th. I'm anxious and nervous and hopeful and nervous...(did I mention nervous?) to see what may become of this effort of mine and many friends of mine in the area. I ask that you keep this in your thoughts and prayers and I will update after our first meeting.

One year of Brownies down

Camille enjoyed her year with a new troop. Ms. Wendy was a great leader, not to mention she works at Wal-Mart and got great things for the troop for this being a community service project she did through work. They held their banquet last week and I loved the sweat shirt hoodies they got for all the girls.



And then Ms. Wendy found some really cute purses on clearance and she decorated each one of them with the girls name and some sequins and then filled them with the girls badges they earned this year. How cute was that!!!



And I gotta finish off by showing my little princess posing:

F A M I L Y

Today we laid Grandpa Hanzely to rest. It was a beautiful funeral and he had full military honors. This was the first time I ever witnessed this and it was truly amazing. Its really quite sad that at funerals everyone can open up a little more and express their love for one another and not feel as odd. It makes me think that often times we let our pride get in the way of our emotions. Everyone wants to feel loved, everyone loves someone at some time, everyone wants to be free to express love, but yet, we don't. Is it that we are simply embarrassed to tell someone that you love them? Is it that we don't want to overuse the word? Is it that we were just raised that way, to hold in our emotions and not wear our hearts on our sleeves? Why is it that its so hard to tell cousins you barely see that you love them, when you truly do? I feel I take so much for granted from each of my family members by simply enjoying time together with them, but avoiding something as simple as just giving a hug and telling them you love them. I need to do this more. You never know when it will be the last time.

I'm feeling a bit emotional having lost two loved ones within a week and a half of each other. One, my uncle, there was no good-byes, the other, grandpa Hanzely, we had three weeks of good-byes and it tore our hearts out to watch him slowly go to be with the Lord. I am hoping that this experience has made me grow a little bit more on the compassion and love aspect.

I have so much to love about my life and there are so many people whom God has put into my life for whom I am so very blessed. I hope that I may find a way to let friends, neighbors, relatives, and enemies (and even internet buddies) know that I love them. I may or may not love what they do or who they are, but I love that God has somehow placed them into MY life and I hope that I can be a true friend / relative.

Thank you Jesus for all these wonderful people you've put into my life and I pray that I might be a light to each one of them and show them the love they deserve.

Oh, and hug your family today and tell them you love them..... I DID!!!!

RIP Henry Hanzely

Today we mourn the loss of Henry Hanzely, aka Grandpa Hanzely. I have been married to Tom for almost 14 years and in that time I have grown to love and cherish his grandparents as if they were my own (I don't have any of my own left). Today at 11:11 am Grandpa took his last breath. He was diagnosed with cancer about 4 weeks ago and it was all through his body so there was nothing we could do for him but keep him pain free. He lived 85 wonderful years and we will always remember him, especially when we pick from his 35 blueberry bushes, several peach, apple, plum and nut trees here on the farm. He is now finally pain free and we praise God for giving him to us as long as he did.

Please keep Grandma (Rita) Hanzely in your prayers. As you can imagine she will be so lost without him. June would have been their 60th Wedding Anniversary, so he was all she knew.

Here is Great-Grandpa and Great-Grandma with almost all of their 15 (soon to be 19) great-grandchildren Thanksgiving 2008: