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Tony
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Stories 4-1-2010: Tomorrow is World Autism Awareness day! I'm encouraging all of my family and friends to show their support for Autism Awareness by wearing BLUE for Autism TOMORROW, Friday April 2nd!
THANKS!
Buffy
3-1-10: Once again, it has been too long since I've updated the kids webpage!! I need to do better.
Brief updates:
Tony had his 5 year checkup and has only grown 1/4 of an inch in the last year and gained about 1.5 pounds. Unfortunately, although he has grown a bit, its not at the rate expected for a boy his age. In addition the fact that he also didn't grow as much as he should have the year before this checkup- has led us to concerns regarding his growth. He is currently in the 10th percentile for his height and has fallen off the chart again for his weight. So- we were sent for some blood work and an xray to check his "bone age" all of which came out normal. For now, his pediatrician is going to try to track his height and weight more closely and we'll see where things go from there. Its absolutely amazing to see how short and skinny he is next to Brayden who is 2 years younger and towers over Tony like a giant! And Kylie is even taller than both of them!
moving on...we are also still trying to find a cause for the frequent pneumonias...and hoping that in finding a cause, we can find a way to prevent so many severe pneumonias in the future. So, this morning Tony had a video swallow study done to check to see if he was maybe aspirating food/fluid into his lungs. He is not. Now we move onto a CT scan of his chest next week looking for problems with his airway, or possible compression of his lungs. And, the week after that (2 weeks from now) he is scheduled to see an immunology specialist to look into his immune system/T-cell count/functioning once again...to see if maybe there's any change there contributing to him getting sick so frequently/severely.
Then we have an update on Tony's Make a Wish (MAW). We have been receiving some light pressure to get the process moving along for Tony's wish. Bill and I aren't really sure what Tony would most like, but we have 99% decided (after some discussion with my friend Becca who is a MAW volunteer in Pittsburgh) that perhaps a Disney trip would be a good idea. Apparently, there is a wonderful, very kid-friendly resort called Give kids the World where most wish kids/families are housed when Disney wishes are being granted and honestly, we think that Tony may most enjoy this resort! They have an awesome playground area, pool, all kinds of awesome stuff for kids! And, we would get complimentary tickets to Disney and other places- so we could take the boys (entire family is included) and try to let them experience Disney without the pressure of possibly wasting loads of money and it not working out... We are also HOPING that there will be a way for us to take along an extra adult helper- likely Grandma Smith- to give us an extra set of hands on the trip since travel with our little ones with just Bill and I is still very stressful if not unsafe/impossible. Anyway...looks like we will be meeting with our wish coordinator later this month and we'll see where it goes from there!
Kylie: Also had her 5 year checkup and is doing fabulous!!! She is in about the 50th percentile for height and 25th percentile for weight. She has grown quite a bit in the last year! I think something like 4inches and 5.5 pounds...I'll have to check my paperwork to be sure. Everything about her is healthy and at or above target. She's doing great! Only thing we need to followup on with her is that she still has her ear tubes in place from about 4+ years ago. Tubes usually fall out about 18 months after they are placed, so our pediatrician recommends that we schedule an appointment with the ENT to have them removed. (I have yet to do this!). She's doing great at school (has been on "green" everyday!) and is also doing quite well with her swim lessons! She is definitely getting more comfortable with the water now- and I'm hoping she'll learn enough to be comfortable in the water this summer. Kylie is also signed up to play spring soccer with a friend of hers....she really isn't the most athletic person ever, so we'll see how that goes!!
Brayden: Is doing AWESOME!!! Unlike Tony who is complete driving me insane and refusing to go pee on the potty, Brayden has picked up potty training like a pro! He's doing most of his pee on the potty now and we're still waiting to see a bowel movement though, and ofcourse pullups for night time/naps. He has learned to zip/unzip his jacket, take it off and hand it to Mommy. He is saying "hi, bye, and mommy" when HE wants now. He can make the "i love you" and "more" signs with ease- again, when HE wants! He is communicating more nonverbally as well- sitting himself in his highchair when he wants to eat, pushing me by hand to the fridge when he wants a drink, etc. He now understand commands like: come here, sit, down, no. And he's doing a TON better behaviorally at school and home! He is transitioning between activities with much more ease and less tantrums....I'm very pleased with his progress!!!! Not to say we don't still have tantrums and issues- but we've certainly seen a lot of small progress with him- all wonderfully exciting!!!!
Bill and I: We just started training for another 1/2 marathon. We are going to run the Columubs Capital City Half on May 1st. Its really just a goal to keep us running/motivated until we start our bigger goal of the Columbus full marathon in october...but we are hoping to better our time atleast a little in the half in May as well.
Other than the running- we are just busy with work and the day-to-day stuff of parenting! But we are healthy and well- and can't ask for much more than that!
Anyway- that's our update. We're doing pretty well these days...knock on wood!!!
Buffy
1-19-10: I'm pretty sure that most of you are following Tony's progress on my Facebook page these days...but for anyone who may not be on FB yet I'll give a brief update and for those of you who ARE on FB, I'll give a little more info here as well.
So, Tony started to improve a bit on Sat. and they were able to wean his oxygen down a little...he seemed to be showing improvements...slept most of the day, but was requiring a little less oxygen. We had friends in town visiting for the twins birthday party, so my mom (grandma) stayed with Tony Sat. night so we could visit with our friends.
Sunday morning, I got a call from Grandma saying she just wanted to let me know that Tony had a rough night and that they had to increase his oxygen amounts. This concerned me a little because his USUAL course is that once they get him on some oxygen and meds, we see steady improvements from there...so to see him going backward and kinda fussy was concerning to me.
Throughout the day Sunday, he continued to struggle a bit and they ended up uping the amount of oxygen he was getting again at some point. They also sent in some other doctors to consult- cardiology and pulmonology. Cardiology basically said that he wasn't in heart failure (!!???@!!!) but that they would maybe recommend doing an echocardiogram of his heart just to check things out and make sure there was nothing there contributing to this. The pulmonologist (lung doctor) recommended long term changes to medication and repeating his chest xray and cultures to see if anything new had developed since his arrival to the ER when they originally did the same tests.
Well, that new chest xray showed a new pneumonia that had not been there upon his arrival to the ER. So, they started him on some antibiotics and hoped that would be enough to see some improvements. This was not the case.
On Monday, we again saw him very restless throughout the day (although he was sleeping non-stop- literally 24 hours a day!) when he did wake for a few seconds, he was very whiney and restless and then right back to sleep within minutes. He was sweating profusely and working very hard to breathe. They again had to up his oxygen because his oxygen saturation levels continued to fall into low to mid 80s despite all the oxygen he was now getting.
By last night (Mon. night) he was getting more oxygen than he was really supposed to be "allowed" to get and stay on a regular inpatient floor...he was still working very hard to breathe, very uncomfortable, sleeping through about 10 doctors poking at him in his room all at the same time...he was exhausted physically and had just tuckered out- his body wasn't able to do anymore work to keep up anymore.
The doctors got concerned that he was going to crash if they didn't get him more breathing support, and that his body was just over exhausted from having to work so hard at breathing for so long...beyond that, he was again dropping into the 80s for saturation levels despite being on max levels of oxygen....so they called an "ACT"??? which basically means a ton of doctors came down, talked to us, talked to each other, examined him over and over- and decided it was time to transfer him to the ICU. He has been there since yesterday.
They put him on bipap breathing machine- which basically helps his lungs expand when he breathes. They also did another chest xray which showed even more significant pneumonia and started him on 3 heavy-duty antibiotics. They started more steriods to help his breathing, ran more cultures and blood work...gave him some sedatives and are trying to keep him more comfortable and let his body rest for a couple of days.
Today, they did an echocardiogram (ultrasound of the heart), and want to keep him on the bipap for the rest of today and see if maybe they can wean that in the next day or two. They are concerned that his pulmonary arteries (his are really his collateral arteries) may be compressing his lungs. SO, they want to run some tests to check that, but they want pulmonogy to decide which kind of test would be best to get a good look at those- it will either be in fluroscopy (radiology) or possibly a surgical scope to get a good look.
Other than all of that...they have him on IV antibiotics that he will need for atleast 7 days. We are HOPING that his cultures come back negative and that they will be able to transition those to oral antibiotics because otherwise, that alone would keep him in the hospital for atleast another week.
I think most concerning right in this present moment is that his respirations are still VERY high- they were up as high as 107 this morning. His pulse oxygen saturations have been OK with the bipap around 92-95ish.
Anyway- that is what's been going on and what we know at the moment. THANK YOU to everyone who has left encouraging comments, and who is sending Tony and us thoughts and prayers!!! And SPECIAL THANKS to Grandpa Smith who has been staying with us to help out!! We are truly blessed to have so many wonderful friends and family in our lives!!
...if you want to follow me on Facebook, I'm under "Buffy Smith-Storm". I'm able to update that more frequently from my cell phone! I will do my best to continue to update here as well.
Lots of love,
Buffy
1-16-10: For those of you who have not yet heard, we had to take Tony to the ER again yesterday morning. What started out as a harmless little wheezing and probable ear infection on Thursday, snowballed into massive symptoms overnight Thursday into Friday morning.
When I got Tony up on Friday morning, he was breathing very fast and hard and vomiting all kinds of bright neon yellow stuff. He was feverish, his heart rate was sky high, his oxygen levels were very low...so I called Bill home from work to come stay with Brayden (who also has a milder version of the same bug- cough and runny nose) while I took Tony into the ER.
Within the next hour, the little man's oxygen levels dropped another 5-7%...we were not heading in the right direction.
When I got him to the ER, they took him directly back into one of the critcal care rooms where he stayed for the next couple of hours while they tried to figure out what was going on and tried to wean his oxygen needs to a level where he would not have to go the ICU.
A couple of hours later, he was finally down to an acceptable level of oxygen to go to a regular floor, but the doctors warned me that "his heart rate is still very high, which may make them nervous upstairs (regular floor) and if his oxygen levels increase again, he will definitely need the ICU- jus to prepare you." Great. They further explained some complications of the meds they were giving him raising his heart rate further and that they may need to put him on bypap if they have to take him off that medicine...which would also be an indication for the ICU....
Well, around 1 or so, we finally made it up the regular floor, did our intake stuff and Tony has been there since. He is still requiring a lot of oxygen, but its down a little less from yesterday morning. He is extremely aggitated and uncomfortable. He is tossing and turning constantly trying to get comfortable enough for sleep- but not having much luck. He is feverish and working quite hard to breathe.
Doctors are concerned that this has now happened twice within a month basically and are going to try to add or adjust meds in an effort to prevent further similar incidents from occuring. They are especially concerned because as opposed to last month- this time, he has NO pneumonia, his viral cultures are negative- so this is just a simple bug that he should be able to fight out- and instead, he's nearly landed himself in the ICU. When I look at Brayden, whom I'm sure has the same bug Tony has...and see the difference, its remarkable, especially considering Brayden also has asthma and yet is able to fight this off so much better.
Anyway, continue to pray for the tough guy...he's pretty miserable still.
On a somewhat happier note...Today is Tony and Kylie's 5th Birthday party! Yep, Tony is going to miss his own birthday party for the 2nd year in a row...its OK, he won't even really know the difference, but ofcourse, it makes me sad. We will just take him to Galaxy Games and Golf when he's feeling better though! Kylie is over-the-top excited!!! She woke up doing a little dance and singing "its my birthday party!" ha ha ha! I'm happy that she will get to enjoy some time with her friends and celebrate her birthday! Its the first time she's actually had her own friends at her party!!
I'm off now to finish getting ready for the party and then going in to see Tony, then going to host the party... Thanks (as always) to everyone who has offered to help, everyone actually helping, and all those praying for big guy Tony. Shout out to Grandma, Grandpa, Sia, "Aunt" Becca and Uncle Jim and Nurse Linda in particular for your help and/or offers to help!...still don't know how we'd do it without everyone!!
Love,
Buffy
1-14-09: Well, we started potty training process with Tony balogna...just days after his 5th birthday...day one we had several accidents and no potty success. By day 2, my little man had IT DOWN!!!! On day 2, he went pees on the potty 6 times!!! Yes, 6 times!!!!! He only had one accident and took a 2 hour nap without peeing in his pullup!!
Yesterday was day 3 and Tony went pee 2 times on the potty, had one accident and peed in his pullup 2 of the 3 times he had one on...still not bad! He also started getting sick this day, so that may have affected our progress a bit.
Today is day 4 and so far, no accidents, no pottying, and peed in 1 pullup...but he's definitely more sick than yesterday even, so we'll have to wait and see how this affects him.
As for the sickness- the tough guy started wheezing again yesterday with cough and runny nose...today is worse than yesterday so we are hoping he is able to fight this one off better than last month...fingers crossed.
CAN YOU BELIEVE IT? MY LITTLE MAN IS GONNA BE A POTTY PRO SOON!!!! :-)
Buffy
1-6-2010: I know as I say this, it sounds quite cliche, but I can NOT believe that Tony and Kylie are 5 years old today!!!!
I have been teasing Kylie for weeks that "she is not allowed to turn 5" and she honestly believed that I had the ability to decide if she got to turn 5 or not...so, in typical parental fashion...I milked it and told her she had to be good if she wanted to turn 5. It worked like a charm and she was quite pleased this morning when I told her that it was official, she got to join the "5 year old club!"
Kylie has been very cute today as well...she went in and without prompting wished Tony "happy birthday twin"...precious!
I had a request from Kylie for cupcakes for her class today "with pink icing" so I was up til the wee hours of the morning baking loads of cupcakes last night! Just over 3 dozen! Tony's class is getting cupcakes with white icing and sprinkles!
I'm not sure what we are going to do to celebrate later- but I'm sure we have a fun-filled evening ahead!
(More for my sake and record keeping than anything) Here is a "where we are at 5" update.
Tony: Is doing amazingly well! He is healthier than he's ever been before, HAPPY, HAPPY, HAPPY litle man! He loves to be tickled and cuddle. He is now able to walk up and down stairs fairly well when holding an adult hand and railing. He can walk down steps holding only a railing but he doesn't LIKE to!! He's starting to eat small amounts of smooth purees by mouth- yogurt, ice cream, jello, pudding, applesauce, and he loves to suck on twizzlers! He is not yet talking or signing but he good at letting us know what he wants and mostly does this by taking your hand and pushing you to what he wants. For a drink, he pushes you to the kitchen and gets his cup. He LOVES to go places and car rides- so to let you know he wants to go somewhere, he will bring you his shoes and push your hand to his feet. Sometimes he will even bring me my purse or keys!! He also has started showing us slight tantrums- he whines and cries when you bring him home from outtings and trips to voice his displeasure. He loves baths and is starting to learn how to put a shirt on himself with light adult assistance. Tony weighs about 31.5 pounds and is about 38 inches tall. Big news for Tony is...he's supposed to start POTTY TRAINING next week!!!! We can't wait!
Kylie: Is in a preK class at school and learning all kinds of good educational stuff! She came home yesterday telling me about the planets in detail- how hot it is on Venus, how the earth turns, we can't live on other planets, just the planet Earth..so cute! She can count to about 130 now (and is very happy to do so several times a day!). She can read and write all of her upper and lower case letters. She is a sponge for knowledge these days so there is really no way I can accurately list all of her new knowledge and skills- sufice it to say, she's a smart cookie and doing very well in school! She is doing very well socially as well and has lots of good friends from school mostly to invite to her birthday party which she is over-the-top excited for! Right now, her favorite activity is probaby drawing pictures. She draws us dozens every day! She also enjoys watching princess movies and make-believe play. She also LOVES to play with all of her stuffed doggies, though her Jayda dog is still her favorite and she still sleeps with Jayda and takes her to school with her every day in her backpack. I haven't taken Kylie to the doctor since her 4 year old checkup, but I'm guessing she weighs around 34-35 pounds...I'll have to update that after we have checkups!
That's all from the Storms! HAPPY BIRTHDAY TONY AND KYLIE!!! We LOVE YOU!!!!!
12-20-09: My appologize to those of you who have not hooked up with me on Facebook to see the updates of the last few days...I know I sorta left you hanging on here.
Tony started to 'turn the corner' Thursday morning and was discharged Friday around 5pm. He was still sounding junky in his right lung. As of today he's sounding much, much better in that lung and he's perked up quite a bit too!
It was a really long week and now we are really behind on our holiday chores...but we're getting there! BIG BIG thank you to Grandma who came down to help most of the week with the kids!!! Thanks also to Uncle Jim who was going to come down Friday but we ended up not needing him due to discharge!!!
Bill and I suffered through an awful 12 mile run this morning. It was snowing at times, the trail we run on was covered with snow and rocky ice and it was just awful! Although our time wasn't great (10:25 pace), I was impressed that we were even able to finish it. I'm not lying when I tell you that before the end of the first mile I was ready to quit...so finishing was an accomplishment in iteself! And now, I feel like I've "banked" some calories burned in advance of the holidays this week!!
I'm heading to Hermitage with the kiddos Tuesday evening to get some extra visiting in with Grandma and Grandpa and help Grandma with some baking and whatever else she needs. Bill will head to PA on Thursday to join us.
I've got some really great pics of the kids on the camera right now that I need to download and edit and then I will post.
We are not doing Christmas cards this year--- just too much going on...but I will try to post a little "year in review" and family picture (if I can get one!) on here!
HAPPY HOLIDAYS to our friends and family! To all of you hitting the road (or the air)- safe travels!!
Buffy
12-16-09: (11:30am) Well, yesterday Tony started retaining fluids so they had to cath him. It took 6 unsuccessful attempts before Urology was called and finally got the cath placed on attempt #7...poor boy!! They aren't really sure why he is retaining fluid but as long as the cath keeps draining, they don't seem to concerned either.
They have been able to wean a little oxygen, then had to go back up, then down, then back up...he's currently on 4 liters at 28%. The plan is to try to wean him to 4 liters at 24% later this afternoon. His breathing treatments are now every 4 hours. His right lung still sounds pretty bad... he is still breathing very fast and labored.
They tell us the only real goal is to wean the oxygen...continue the same plan and keep trying to wean him. When he is able to breathe without the oxygen, they will want to watch him overnight to make sure he does OK and then we can go home. They would also like to see him voiding urine before he leaves.
The little man seems pretty uncomfortable when he is awake, but is sleeping most of the time. His poor body is totally worn out from all the work of breathing right now. He is a sweaty, exhausted mess!
I'm grateful he is sleeping mostly and hoping to see some more progress with decreasing the oxygen today...
That's really all I have for an update...not a lot of change. I'm assumming at this point that Friday would be the earliest he gets discharged...and even that MAY be optimistic...
Thanks for the thoughts and prayers! I'm off to pick up Brayden from Preschool now while my mom stays with Tony and Bill is at work...
Buffy
12-15-09: Update on Tony- he is doing better than yesterday!!! He is still on quite a bit of oxygen, but its about half of what it was yesterday- so there is progress atleast! He's still having labored breathing and is quite uncomfortable when he coughs, otherwise he is sleeping A LOT! I'm grateful for that!
He is still getting his around the clock breathing treatments but they are down to every 3 hours instead of every 2. The goal is to get him to where he only needs them every 4 hours and needs NO oxygen...but we have a ways to go still.
He's also getting IV antibiotics and steriods.
Little man pulled his IV out last night and was found laying in quite a bit of blood, but they managed to get another one in without much difficulty.
That's the only real update. Baby steps.... Please keep the prayers coming...he's pretty uncomfortable still.
Buffy
12-14-09: Well Mr. Tony woke up yesterday wheezing and feverish...we gave him albuterol treatments every 4 hours along with motrin...around the clock but his pulse-oxygen levels continued to drop despite all of this. This morning when I checked him after his breathing treatment they were 83% which is pretty low, so I dropped off Brayden and Kylie at school and took Tony to the ER.
When we got there, his pulse-oxygen level was 82% and heart rate sky high- they started him on oxygen and several breathing treatments and finally got his levels up into low 90%s...
After chest xray, the determined that he has pneumonia again. He is currently on the max amount of oxygen he can get without needing to go the ICU. They are observing him for a bit in the ER while the decide if he can be admitted to a regular room or needs the ICU.
Extra prayers for my tough guy would be appreciated!!
(I'll post updates as I can!)
Love,
Buffy
12-12-09: Well, Christmas came early for me this year...I got a new camera and I wanted to be able to use it for the holiday shots so when it came in the mail yesterday, I busted it open and have spent a good bit of time trying to figure out how all of the new features work! I'm so excited because the new camera takes pictures a TON faster than my old one and has already allowed me to capture some great shots that I never could have gotten with the old camera...shots of the boys SMILING!!!!!
We took the kids to an indoor play area at our local mall tonight and they ALL LOVED it!!! We had a great time and tried to remember to take some pictures while we were there...check them out in the "pictures" section!!
Buffy
12-10-09: Well, its been an exciting 24 hours in the Storm home. I went to dinner last night with a friend of mine and got a text while I was out from Bill saying that Tony had fallen down a flight of stairs but was fine. I was anxious, but figured if he was OK, then alright- no harm done.
I finished dinner and a little xmas shopping with my friend Samantha and then headed home. I walked in the door and saw Tony laying on the couch not looking so good and with a towel under his head. I asked Bill what was going on and he said "he vomitted." My gut sank because I know enough from working at the Urgent Care to know that when a child had head trauma and then vomiting- its cause for concern. So, I started asking Bill more questions and noticed that Tony was still pretty whiny whenever you moved him...we decided he needed to go get checked out.
Bill packed him up and took him into the Urgent Care where I work and the doctor there checked him over in the lobby and decided that Bill needed to take him to the ER. So, Bill then drove him to the ER where they were quite busy...waited for a bit, got evaluated and sent back to the wait room while they waited for space. Several minutes later, they called Tony back ahead of most of the waiting room and eventually decided he needed to have a CT scan of his head.
After quite some time, we learned that the CT scan was negative for bleeding in the brain or skull fractue and that they suspect based on his symtpoms that he has a concussion. He was released and sent home.
It was a scary ordeal and I was really worried about my little man, but quite relieved that its "only" a concussion and nothing more! He's back to his usual self for the most part today- although a little sleepy from the long night in the ER.
Thanks to everyone who saw my post on Facebook and offered thoughts and prayers! I'll tell you, that little boy is the strongest kid I have EVER met!!!
Buffy
12-8-09: Well, looks like winter has officially arrived! I consider winter "arriving" when we get our first real snow and that came yesterday morning to our home in Columbus...BRRR!!!
Some of you may know that Bill had a work conference in Miami last week and I was lucky enough to tag along to enjoy some sunshine!! It was a very brief visit (left Wed. returned Fri. late evening) but wow was it nice! So warm, sunny the first two days and lots of "down-time" just what the doctor ordered!!
Well, the boys were sleeping when we got home Friday night so the first that they saw us was Sat. morning when I went in to get them up in the morning. Brayden was inpatiently waiting at their bedroom door for me and when I saw him (as I regularly do) I made the sign for "I love you" to him...and to my shock, HE DID IT BACK!!!!!! And he's been doing it in response to my doing it to him ever since!! SO EXCITING!!!! Needless to say, that has been my big exciting news that I've been dying to get on here to share!
Also, wanted to say a GREAT BIG THANK YOU to Me-Mal (Bill's mom) for coming to Columbus to stay with and take care of the kids so that I was able to get away with Bill to Miami!!! I can't tell you how much I appreciate it and the kids had a fabulous time with Me-Mal and Uncle Ronnie too!!
On the down side of our return- its freezing here, like I said...and Tony came down with pink-eye yesterday and then was generous enough to share it with Kylie who woke up with it this morning as well. So, today its me and the twins at home this morning...and keeping my fingers crossed that Brayden will escape without catching it!!
Not a lot else going on here...Bill and I are in the thick of training for our next 1/2 marathon which we are going to run on our own (not in a race) sometime in early January. Its been different getting used to running in the sub-freezing temps, I'll just leave it at that!!! We are excited though as we've been able to improve our pace over long-distance runs nicely. We are hoping to run the 1/2 in atleast 10 min. less than we did in October.
We hope you all are doing well and enjoying the holiday season!!
Love,
Buffy
11-16-09: Oh my gosh! Has it really been over a months since I've updated the webpage??!!!! Obviously, we have been very busy lately!! Here is a quick update from our family.
Brayden has been moved out of the toddler classroom at Oakstone Academy and is now in an official Preschool class! I have to admit I was really worried about how he would do transitioning to a much more "class" like setting- and we are still having some issues...but he's doing it!! Expectations are much higher in the new classroom- he is now expected to do more for himself, to focus more at task for longer periods of time, etc. He's still having some issues- but he's getting there!! Mr. Brayden also had his 3 year checkup with the pediatrician and is in the 85th percentile for height and weighed in around 37lb in the 90th percentile. He's my big boy, that's for sure! In the last month, Brayden has also started learning to feed himself!!!! He can do it just fine- its a matter of getting him to do it and dealing with the clean up issues. He's in a habit of throwing bowls of food across the room...so its more a matter of us and how long do we have, how much patience do we have to deal with it all! But, he's learning!!!
Tony is doing really well at school!! He continues to amaze me with how much more "with our world" he is!! He is understanding so much more as far as receptive communication- and learning more and more ways to communicate with us non-verbally. They are still gestures like tugging at my hand and placing his cup into my hand when he wants a drink- things like that, but he is getting good at letting us know what he wants/needs. Little man missed his first days of school since LAST SPRING (yes, you read that right!) 2 weeks ago when he came down with the flu and ear infections (2 separate infections). He missed an entire week with high fevers and wheezing- but NO HOSPITAL OR ER visits!!! He's getting stronger!!! He continues to eat some by mouth which is very exciting!! At parent-teacher conferences his teachers tell me that once they finish potty-training the one girl in his class (they do one child at a time)- Tony is next for potty-training!!!! We are looking to begin that fun process with him around Christmas! I can hardly believe it!!
Kylie is doing fabulous- learning all kinds of new things! She can now write most upper and lower case letters, knows her address and is learning her phone number. She can spell a few small words... she is soaking up all kinds of new knowledge at school- comes home telling me about dinosaurs, nocturnal animals...all sorts of things! And yes, I'm learning right along with her! ha ha ha!!! I had parent-teacher conferences a few weeks ago and her teachers had all wonderful things to say about her! She is very well behaved at school, does anything they ask, is very social, and "very bright" according to her teacher. GO KYLIE!!! She also started taking some swim lessons this last month and is enjoying those! She is now a head-dunker, does bobs, blows bubbles...she's getting there!
Other family news- we had our trip to Orlando last week!!!! It was incredible!!! Great memories made with my family! Everyone got along great and the entire trip turned out fabulous!! After having made the trip- I am SOOO thankful that we decided not to take the boys along- they would NOT have enjoyed themselves and it just would not have worked well for any of our family. I was a little sad at times thinking that I wish they would/could enjoy the things that their cousins/sister do...but they are so special and in their world- Disney and airplanes would be more torture than fun...so it is what it is and we all ended up happier with things the way they were! BIG BIG THANK YOU's to "Aunt" Becca, her mom Mary, Header/Heather, Samantha, and Nurse Sia who all helped to take care of the boys while we were away! :-) We appreciate the "break" more than you can imagine!!!!!
So- vacation...we hit Disney and Sea World but Kylie mostly preferred to stay at the house and swim and play with her cousins!! We had dinner with Cinderella and Prince Charming and Kylie REALLY enjoyed meeting everyone!! She got to dance with Cinderella and Prince Charming and tells everyone how Prince Charming "kissed my hand like this" after they danced! So CUTE!!! Her other favorite thing was that she was big enough to ride a water log ride at Disney (with adults) and it had a pretty good size down-hill drop- so she LOVED that!!! We had a great time and once I get a chance, I will surely download and post some pictures (within the week)!
Now its back to life and for Bill and I...back to running. We have decided to train for another 1/2 marathon- which we will do on our own around Jan 10th...hoping to better my previous time. And then, we are going to go right into a 16 week training plan in preparation for the Pittsburgh Marathon on May 2nd. WISH US LUCK!!!!
That's all from the Storm home! Its been a pretty good month for us :-) Hope you all are doing well also!!!
Buffy
10-14-09: I can hardly believe it! My littlest man turned 3 yesterday!!! Where has the time gone?? Well, I'm not really sure that Brayden understood that it was his birthday- but if he didn't, it sure wasn't for a lack of trying!! Kylie and I referred to him as "the birthday boy" all day long, we showered him with affection and lots of play. We took in treats to share with his friends at school, made cupcakes, and had a special visit from Miss Linda (complete with some pretty special gifts for the birthday boy AND his siblings!- thank you!!). His teachers at school said he had a great day, and I was at school volunteering for a bit in the morning- when I peeked into his classroom,he was all smiles- so I felt good that even if he didn't understand it was his birthday- atleast he was having a good day!
We did a little celebration for him on Sunday while some folks were in town for the Autism walk- we had cookie cake and pizza. He wasn't too interested in any of it- but, we celebrated none-the-less.
HAPPY BIRTHDAY CHUNKY MONKEY!!!! We LOVE YOU!!!
10-11-09: WOW, its been a very busy day here! First of all, today is Bill and my 6th wedding anniversary! I love you Bill!!! Also, today was the Autism Walk. Thanks to Grandma, Grandpa, Marcus, Becca, Nurse Sia, Lisa, and Uncle Jim for coming along to walk with our team today!!! Thanks also to others who offered their support- Beth, Patty, Patti and everyone else who contributed to our effort!! I was completely surprised and overwhelmed to see so many people at this event! It was HUGE!!! Last I checked, over $400,000 were raised for Autism Speaks! That is amazing!!! The walk was well done and we will definitely repeat this event in the future! We truly appreciate everyone who offered their support to us!!
After the walk, we came home and watched the Steeler game!...and then celebrated Brayden's 3rd birthday! Can you believe my little man turns 3 on Tuesday!!??!!! I am having a hard time convincing myself that this is true!!!
Anyway- there are a few pictures posted from the walk today so go check them out!
Tomorrow is Columbus day so no school for the kids and Bill is also off of work, so I'm trying to find a pumpkin patch that we can take the kids to...if the weather is nice. If we make it out, watch for additional pictures soon!
Take care and stay warm!
Buffy
9-29-09: Mom's heart cath went well yesterday. Thank you so much to everyone who was praying for her! They said that her heart was spasming and they think that was just from it reacting to the new stent- they are going to start her on a new medication and say that should help clear it up. I haven't spoken with her yet today, but that's the last I heard.
Also, a quick update to share some good news on my boys!!! Tony continues to eat atleast 1 yogurt every single day- and MANY days, he is eating 2 yogurts now!!!! He does seem to be getting a little bored with it though, so I'm trying to find other foods/flavors to keep his interest- but he doesn't seem to care for anything else I've offered yet! And Brayden...brayden has started learning how to self-feed!!!! HORRAY!!!!! I'm so flipping excited about this!!!!!! He still needs some hand-over-hand help, but he is getting there and learning to feed himself with his spoon! So...maybe I won't have a 15 year old that I'm still spoon feeding baby-food after all! (this has started to become my latest fear- we are so sick and tired of spoon feeding him!!!) LOL.
Anyway- that's the latest. And this just might be one of my shortest updates of all time! lol
Buffy
9-28-09: For those of you who haven't heard yet- my mom was re-admitted to the hospital over the weekend with more chest pains. They *think* that either her stent has been displaced or that her heart is reacting badly to the stent. She is scheduled for another heart cath this morning. PLEASE keep her in your prayers and I will try to update this site when I hear more!
This past weekend Bill and I were fortunate enough to complete our longest training runs to date! We ran 12 miles together and at that point, my run was over (training for the half marathon) and Bill went on to run another 8 miles (training for the full marathon) for a total of 20 miles!!! I'm totally amazed at his will-power and determination to run this marathon! I'm actually inspired!! Now I feel like the half marathon is not so much of an accomplishment and feeling like maybe next year I should push myself to run the full marathon as well... Anyway, we are set to decrease our mileage over the next couple of weeks and then will be running our races on the 18th of October here in Columbus! I'm so excited and proud of us! We have been very committed to logging all of these training miles and even when we have been sick, sore, or in pain- we have gotten through it and now we are getting really close to race day! And in the process- I have lost all of the remainder of the "baby-weight" I had and then some, and Bill is down about 25 pounds right now from where he started as well. Especially with all of the heart problems my parents have been experiencing, and with Bill's dad having passed away so young from a heart attack...when I get tired during the long runs, I keep telling myself "I have to take care of myself so that I'm here to take care of my kids for a LONG time to come." And it really keeps me going!
Also in a couple of weeks we will be doing the "walk now for Autism" walk in Columbus on October 11th. If anyone is interested in joining or making donation you can do so at: www.walknowforautism.org/columbus/teamstorm
Happy Monday everyone (try to forget about that Steeler game)...and please keep the prayers coming for my Mom!!!
Love,
Buffy
9-18-09: I'm getting packed up today and getting ready for a weekend trip to Pittsburgh for some quality time with my girls!!!! I can't wait to see some dear friends and have a girls weekend!!!!....very much needed little 'break" for me! And I want to publicly give Kudos to my hubby for willingly watching all the kids this weekend while I am away!!
I also wanted to update that Tony balogna ate ANOTHER entire yogurt yesterday AND he was even taking the spoon from Sia (his nurse) and feeding it to himself!!! Sia had to put the yogurt onto the spoon for him, but he was doing the rest! I have a video clip that I will try to see if I can get posted here. SOOOOOO exciting!!!
Finally, my mother-in-law, Patti is selling MaryKay as a fundraiser for the Autism walk, so I wanted to post a link here: www.marykay.com/pruss if anyone out there is interested!! Also, here is the link once again to our team page if anyone is interested in walking with us or donating: www.walknowforautism.org/columbus/teamstorm The walk is coming up soon, October 11th. And big THANK YOU to everyone who has already donated or committed to walking with us!!!
Finally, I just want to mention that my little Brayden's tantrums seem to have increased again recently and with all of his throwing himself to the ground and head-banging in the midst of these, he's becoming quite battered and bruised. We are trying to find a way to control these, but if you all would say a little prayer for a quick solution and less bruisesand injuries, I would really appreciate it!! The poor guy is covered in little bumps and bruises right now and I feel so bad for him.
That's all for now- have a great weekend!!!
Buffy
9-16-09: I'm SOOOOoooo excited!!! Tony just ate an entire YoPlait Dora yogurt!!!! And, he seemed to enjoy it! he was excited and pulling the spoon toward his mouth! That is the most he has eaten by mouth in atleast 2 years!!!! I know they are working on eating at school and this is just Sooooo exciting!!! GO TONY!!!
Buffy
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