Sunday, December 28, 2008
Thursday, December 18, 2008
The weather outside is frightful...
...but inside is nice and toasty. Mommy has been busy taking pictures of me for our Christmas card. She wanted to post her two favorites (that didn't actually make it on the card).
Why mommy, are you making me hold this giant letter Y?
This is Evan tonight (post surgery)--pretty handsome boy :)
Why mommy, are you making me hold this giant letter Y?
This is Evan tonight (post surgery)--pretty handsome boy :)
Really?!?
I got a kick out of this "gift" courtesy of the Washington State Department of Health. Obviously, the person who sent this out knows nothing about our child. To begin with, Evan is 3 1/2 years old now...there would be quite a few catch up entries if I were to try and use this booklet.
The best part is how much room they allow for notes! Granted, my record-keeping is probably taken to the extreme (I have two big three-ring binders full of Evan's test results, reports from specialists, evaluations, etc). I don't think Evan has ever had a well-child visit in his life--we always have some sort of problem that needs investigated. But I find it hard to believe there would be enough room to record much of anything for a typical child!
The best part is how much room they allow for notes! Granted, my record-keeping is probably taken to the extreme (I have two big three-ring binders full of Evan's test results, reports from specialists, evaluations, etc). I don't think Evan has ever had a well-child visit in his life--we always have some sort of problem that needs investigated. But I find it hard to believe there would be enough room to record much of anything for a typical child!
Wednesday, December 17, 2008
Successful Surgery
The boys made it home around 10 pm last night. Evan did not appear to be in any discomfort, and was wired (I guess we know the answer to the question "Does 4 hours of general anesthetic equal a nap?"). He wanted to walk the loop around the kitchen with Jeremy, and didn't go to sleep until 3 am this morning!
The urology surgery was uneventful, and he woke up from anesthesia sounding pretty junky (normal for him), but otherwise fine. I understand he was combative during the pre-op, so much so that he was given some sedative. He immediately turned into "noodle boy" and they were even able to do the CT and MRI with just the sedative.
The hearing test results were interesting. There was no response aided or unaided on the right side (the side with his bendy ear). Aided on the left side, the results showed a moderate hearing loss. The cochlea appears to be functioning better than was thought--it's the middle ear that isn't working properly. This is interesting, as we don't really notice any difference in Evan's behavior with his aid on--he doesn't act like he hears anything. The bone conduction aid was mentioned again, which we did try briefly and also didn't seem to make much of a difference. We will know more about how we are going to proceed after Evan's appointment with Dr. Sie in February (she would be Evan's surgeon for the implant).
The urology surgery was uneventful, and he woke up from anesthesia sounding pretty junky (normal for him), but otherwise fine. I understand he was combative during the pre-op, so much so that he was given some sedative. He immediately turned into "noodle boy" and they were even able to do the CT and MRI with just the sedative.
The hearing test results were interesting. There was no response aided or unaided on the right side (the side with his bendy ear). Aided on the left side, the results showed a moderate hearing loss. The cochlea appears to be functioning better than was thought--it's the middle ear that isn't working properly. This is interesting, as we don't really notice any difference in Evan's behavior with his aid on--he doesn't act like he hears anything. The bone conduction aid was mentioned again, which we did try briefly and also didn't seem to make much of a difference. We will know more about how we are going to proceed after Evan's appointment with Dr. Sie in February (she would be Evan's surgeon for the implant).
Tuesday, December 16, 2008
Surgery Today
I didn't post about this earlier (I didn't want to jinx it), but Evan is having surgery at Children's today. It is the long awaited urology procedure along with testing to determine cochlear implant candidacy (MRI, CT, and BAER hearing test).
The boys checked in at Children's at 11:30 this morning. I just called Jeremy to see if there were any updates, but went right to his voicemail. Knowing how difficult cell reception at the hospital is, I'm not surprised. I'll update when I know more.
***Update***
I talked to Jeremy around 4:30. Evan had his CT and MRI done under sedation, before going under general anesthesia. After the scans were finished, he had the urology surgery which took around 2 hours. Dr. Lendvey said he did very well, and was "like a rock" respiratory-wise during the surgery (Evan has had issues with keeping his oxygen levels up under anesthesia in the past). At the time Jeremy called, Evan was having his hearing tested. He would probably go to recovery around 5:00, and if all went well they would get to leave Children's around 6:00.
The boys checked in at Children's at 11:30 this morning. I just called Jeremy to see if there were any updates, but went right to his voicemail. Knowing how difficult cell reception at the hospital is, I'm not surprised. I'll update when I know more.
***Update***
I talked to Jeremy around 4:30. Evan had his CT and MRI done under sedation, before going under general anesthesia. After the scans were finished, he had the urology surgery which took around 2 hours. Dr. Lendvey said he did very well, and was "like a rock" respiratory-wise during the surgery (Evan has had issues with keeping his oxygen levels up under anesthesia in the past). At the time Jeremy called, Evan was having his hearing tested. He would probably go to recovery around 5:00, and if all went well they would get to leave Children's around 6:00.
Friday, December 12, 2008
Chairs
Oh yes. I pushed the chair over here and climbed up into it all by myself.
Oh boy. I'm contemplating all the things I can get my hands on now. With this new skill, the possibilities are endless!
Monday, December 1, 2008
Someone is feeling better today :)
Check out my mischevious grin from this morning. Mommy had just finished taming my snarl of curls with a wet comb, and wanted to get a picture of me with my hair all slicked back. It's not a great picture of my hair, but mommy loves my huge smile.
Sunday, November 30, 2008
Status quo
Not much has changed here. Yesterday was Evan's last day of steroid syrup, and he is not any better. His pediatrician is arranging a repeat chest xray this morning, and we'll go from there. This bug is seriously kicking all of our behinds...we'll be so glad when it's over. I'm staying home from work tomorrow. That's pretty sick...I haven't called in sick to work since Evan was born.
1:30 pm - Update
We are back from the hospital. Evan's chest xray looked good, and Dr. Oldham felt his breathing was not labored or wheezy, and his ears were clear. Evan really perked up for Dr. Oldham--he was walking all around the imaging waiting area, looking up at the lights and giggling (not the same boy that this morning had us making the worried after-hours page...). Dr. Oldham didn't think any more prednisone was necessary, and said we could use our discretion on the albuterol. He thought getting up and walking around was the best thing for Evan--it would expand his lungs and really help him cough up the extra mucus. In fact, he suggested that we take Evan outside for a walk when we got home, provided Jeremy & I felt up to it (we were a sight I'm sure, both decked out in surgical masks and we brought our own hand sanitizer). Jeremy and I both got prescriptions for azithromycin (it is likely we have secondary bronchitis, and there is no sense in us passing bronchitis back to Evan now that he's getting well--Evan is already on antibiotics). All-in-all, a very productive visit.
We stopped at Rite-Aid to pick up our drugs, and the trip to town wore Evan out. He's napping right now. We'll see about that walk when he wakes up.
I also wanted to clarify I completely understand my family's not wanting to come share our germs on Thanksgiving Day. They have called once or twice every single day this weekend to check on us, and suggest some helpful home remedies (I'm still working on getting the house more humidified, Mom...). I did not mean to sound bitter in my earlier posts--can we just say this bug is keeping me from thinking clearly???
1:30 pm - Update
We are back from the hospital. Evan's chest xray looked good, and Dr. Oldham felt his breathing was not labored or wheezy, and his ears were clear. Evan really perked up for Dr. Oldham--he was walking all around the imaging waiting area, looking up at the lights and giggling (not the same boy that this morning had us making the worried after-hours page...). Dr. Oldham didn't think any more prednisone was necessary, and said we could use our discretion on the albuterol. He thought getting up and walking around was the best thing for Evan--it would expand his lungs and really help him cough up the extra mucus. In fact, he suggested that we take Evan outside for a walk when we got home, provided Jeremy & I felt up to it (we were a sight I'm sure, both decked out in surgical masks and we brought our own hand sanitizer). Jeremy and I both got prescriptions for azithromycin (it is likely we have secondary bronchitis, and there is no sense in us passing bronchitis back to Evan now that he's getting well--Evan is already on antibiotics). All-in-all, a very productive visit.
We stopped at Rite-Aid to pick up our drugs, and the trip to town wore Evan out. He's napping right now. We'll see about that walk when he wakes up.
I also wanted to clarify I completely understand my family's not wanting to come share our germs on Thanksgiving Day. They have called once or twice every single day this weekend to check on us, and suggest some helpful home remedies (I'm still working on getting the house more humidified, Mom...). I did not mean to sound bitter in my earlier posts--can we just say this bug is keeping me from thinking clearly???
Friday, November 28, 2008
Our Thanksgiving...
This year, the three of us stayed at home for Thanksgiving, Black Friday, and will continue to be home for the forseeable future. Whatever the bug Evan has is, he has shared with Jeremy and I. We are all achy, coughy, and stuffy-nosed. I'm sure I will get some flack from my parents for posting this, but they opted to give our family a wide berth this weekend (the original plan was we would go to Yakima for Turkey Day). I wasn't too sick yesterday, and made us cornish game hens (no time to defrost a turkey), and the typical sides.
Evan is hanging in there, but still is obviously not feeling well. He will have 5 minute bursts of energy after he gets his albuterol treatments, and will get up and toddle around. But then it's back to laying on the floor. I went to go pick up some more oxygen tanks for him--Jeremy got 3 E tanks Wednesday night, and by this morning they were all empty (oxygen goes quickly when it's run through the CPAP). I returned the empties and picked up 3 full ones. When I asked if we could have any more for the weekend, the medical supply company ended up sending an oxygen concentrator home with me (talk about a step backwards...). It's only temporarily...hopefully very temporarily.
Jeremy and I woke up at 3 this morning both feeling very wheezy and congested. If there is a plus to all of Evan's breathing treatments, it's that Jeremy and I both took advantage of the albuterol nebulizer last night (it really helps--I highly recommend it with a chest cold).
Tuesday, November 25, 2008
One Sick Boy
Unfortunately, Evan's bug has gotten worse in the past 24 hours. Last night he was very restless and set his alarm off frequently (we left the CPAP off because the night before it seemed to worsen his cough, and last night he wasn't sleeping soundly enough to put it on without waking him).
Jeremy took Evan in to the doctor's office this morning...they were there from 9:30 am until 1:00 in the afternoon, by the time Evan had his blood drawn, a chest xray, and a nose culture. Evan can stand in front of the xray panel, so he doesn't have to be crammed into the tube contraption any longer. Blood draws just get harder as he gets older--it required 3 phlebotomist, 1 daddy, and 2 sticks. Dr. Oldham came in just to see Evan (this was his normal administrative time), that's how sick our little guy is. The dreaded words "admit him to the hospital" briefly came up, but fortunately did not happen (possibly knowing we have CPAP, oxygen, and a pulse oximeter at home helped?). He is on oral prednisone, cefprozil antibiotic, and albuterol every 4 hours. And tylenol.
When I came home from work, Evan was walking daddy around the kitchen circuit, and was not looking terribly ill. The prednisone must have given him a little boost, but within about 5 minutes he was laying on the floor looking pretty sick.
Jeremy called and cancelled his surgery for the 2nd...it was pretty obvious it wasn't going to happen. Hopefully, third time will be the charm???
Monday, November 24, 2008
Rough Night
Evan is sick again. Last night was a rough one--he woke up at 11 pm with a low fever and didn't go back to sleep until 2 am. We had planned on keeping him home from preschool all this week, to minimize the chances of him getting sick before his surgery on December 2nd (this is the urology surgery and CI candidacy MRI and BAER, rescheduled from October because of illness). Oh, the best-laid plans...
I'm reviewing the events of the past week to see where he would have picked it up from. He was at preschool last week. I took him out shopping on Saturday and Sunday, but was careful to disinfect all the touchable parts of the shopping carts. I did catch him yesterday chewing on one of his shoes, but that seems awfully fast to come down with symptoms.
Hopefully with lots of rest he'll get over this in time to keep his surgery appointment (we can always hope, right?).
I'm reviewing the events of the past week to see where he would have picked it up from. He was at preschool last week. I took him out shopping on Saturday and Sunday, but was careful to disinfect all the touchable parts of the shopping carts. I did catch him yesterday chewing on one of his shoes, but that seems awfully fast to come down with symptoms.
Hopefully with lots of rest he'll get over this in time to keep his surgery appointment (we can always hope, right?).
Tuesday, November 18, 2008
Mommy and Me Time
Daddy was busy doing some work on a neighbor's house last weekend. So it was just mommy and Evan at home all day Saturday and Sunday. Evan is a big time daddy's boy, so I was wondering how this would go over. There were tears at the baby gate when daddy said goodbye, but it didn't take long for them to subside. We must have walked 50 laps around the kitchen. We resurrected a fun trick Evan used to love: spinning him on his back on the kitchen floor. He loves it still--he would come and get me from the other room, walk me to the kitchen, lay down and pull my hand to his leg (my "handle" for spinning him). We played cars and blocks and went for a walk. Evan let me snuggle him for a few minutes early Saturday evening. It was the best weekend we've had in a long time.
Sunday, November 16, 2008
Charge it for CHARGE
The CHARGE Syndrome Foundation has started a brand new fundraising campaign called "Charge it for CHARGE" (catchy, isn't it?). Below is the address of Evan's page:
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=293919&lis=1&kntae293919=6F0DE842FB294BC989368EEBA149BE0A&supId=239576325
I realize times are tight, and we have to pick and choose what charities are the most important to us personally to support. But if during the holiday season you find you have some available funds that are in need of a charitable organization, I would encourage you to consider the CHARGE Syndrome Foundation. The Foundation truly did write the book on CHARGE Syndrome--the education it provides for families and professionals is critical for the health and advancement of individuals born with CHARGE Syndrome.
***Initially the above web page was not correct. I have since updated it, and it appears to go directly to Evan's fundraising page. If it does not, you can search for our page by name--it's under Sarah Storrs***
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=293919&lis=1&kntae293919=6F0DE842FB294BC989368EEBA149BE0A&supId=239576325
I realize times are tight, and we have to pick and choose what charities are the most important to us personally to support. But if during the holiday season you find you have some available funds that are in need of a charitable organization, I would encourage you to consider the CHARGE Syndrome Foundation. The Foundation truly did write the book on CHARGE Syndrome--the education it provides for families and professionals is critical for the health and advancement of individuals born with CHARGE Syndrome.
***Initially the above web page was not correct. I have since updated it, and it appears to go directly to Evan's fundraising page. If it does not, you can search for our page by name--it's under Sarah Storrs***
Friday, October 31, 2008
Briefs
Since those first couple of lucky pees in his potty chair, Evan has not show the least bit of interest in potty-training. I saw these tiny Mickey Mouse briefs at Target a few months ago, and couldn't resist buying them for him to wear "someday". They were washed and put away in Evan's dresser until I saw them this afternoon.
Doesn't he look so grown-up? Evan really seemed to notice that something was different...or at least less bulky. He didn't stay dry for long, maybe 10 minutes before there was an accident and we put him back in a diaper. But this is a definite goal for all of us now.
Doesn't he look so grown-up? Evan really seemed to notice that something was different...or at least less bulky. He didn't stay dry for long, maybe 10 minutes before there was an accident and we put him back in a diaper. But this is a definite goal for all of us now.
Tuesday, October 28, 2008
Pictures from the past week...
The first group of pictures were taken in our friends the Kocher Family's orchard. They have a cider-pressing party every year--this was the second time Evan and I have gone. Jeremy will probably be mad I posted the picture of him contemplating the apples, by my camera ran out of batteries early on in the day so that was as good as it got.
Today, Evan's preschool class went Trick-or-Treating around the Psychology Building. Evan was a Fireman (we were not the only parents with this idea...). Jess was a pirate--I love the parrot that is sewn to his shouler. Jeremy was guilted into dressing up by Evan's preschool teachers--he put together his "grease-monkey" costume in under an hour. Priceless!
Today, Evan's preschool class went Trick-or-Treating around the Psychology Building. Evan was a Fireman (we were not the only parents with this idea...). Jess was a pirate--I love the parrot that is sewn to his shouler. Jeremy was guilted into dressing up by Evan's preschool teachers--he put together his "grease-monkey" costume in under an hour. Priceless!
Thursday, October 23, 2008
A "Jer" of All Trades
So this has nothing to do with Evan, but I have to brag that my husband is the best! Adding to the list of things he can do: slit-lamp repair man (for those not up on the opto lingo, a slit-lamp is essentially a microscope mounted on its side--I use it during every single exam).
There is some back-story here. I've been wanting to buy another slit-lamp for my second office, but new ones are outside my buget. So I had been shopping for a good used one. I found one that was the exact same model as one I already own (vintage 1982). The seller was a retiring optometrist in the midwest. She partially disassembled and packed the slit-lamp. I scheduled a pickup with FedEx (not an easy task). When we unpacked the slit-lamp, I was very dismayed to find it was damaged--there was a 1/4 inch metal piece that was sheared in two, and there were some dents in the housing for the optics. It still worked, but I was upset that it wasn't "perfect" (with the way my life is, you might be tempted to think I would be over that by now...). I contacted the seller, and she agreed to refund my money right away.
Then we began the process of turning in a damage claim to FedEx. The situation was complicated by the fact that I, the buyer, had ordered the pick-up and payed for the shipping (normally the seller pays--this turn of events had all the customer service agents in a tizzy). FedEx wouldn't let me file the claim--they made the seller do it. But after she filed the claim, they made me write a letter releasing "my" reimbursement back to the seller. Then they had to inspect the damage to decide if they would pay. I thought that meant they would come by my office to look at the slit-lamp. Wrong--I had to repack it and send it back to FedEx "head-quarters." The inspector ruled that the equiment was not packed properly, but it doesn't really matter because if you read the fine print on the shipping order they do not honor any "Fragile" or "This Side Up" marks on the box. It also states that the item has to be packed well enough to not be damaged if it's dropped three feet (the distance between conveyer belts). I don't know why they even have a claim process--it's pretty obvious they have no intention of ever paying for any damage. My interpretation: don't send anything by FedEx you actually care about that is not replacable.
Evidently, the inspector assumed that no one gave a crap about the slit-lamp anymore, because they just threw all the pieces back in the box. FedEx attempted to deliver the box back to the selling optometrist, who during this time had closed her office. They called me and asked if I wanted it back--they would have just thrown it away--I said I'd take it. The box appeared again at my office 3 days later, looking every bit like it had been transported half-way across the country twice. It sat there for two weeks--it made my stomach hurt just thinking about what a waste it was.
Finally, I brought the slit lamp home. Jeremy opened up the box and it was really a mess--broken bits of plastic and glass, paint all scuffed up, housings dented... He didn't make any promises, but he said he'd "see" if he could fix it. The first thing he did was weld together the metal part that was broken--he sanded and painted it and you can't even tell it was ever broken. Then he reassembled and glued all the broken plastic parts. He realigned the optics. There are two parts that could not be repaired, and I'll have to see if I can order replacements. I still don't know if the lamp part works yet (the lightbulb was broken during one of the shippings), but it looks really good. Had I know he would be able to do such a good job, I would have cut my losses and just kept the slit-lamp in the first place.
I was absolutely amazed when I walked in through the door tonight. I know what love is...it's a man who is willing to spend 10 hours putting together a piece of equipment that most would write off as a lost cause because he knows how much his wife hates wasting and throwing things away. And I also know what shipping company I will NEVER use again as long as I live...as soon as I have some time, I am sending FedEx a complaint letter and am closing my newly opened office shipping account.
There is some back-story here. I've been wanting to buy another slit-lamp for my second office, but new ones are outside my buget. So I had been shopping for a good used one. I found one that was the exact same model as one I already own (vintage 1982). The seller was a retiring optometrist in the midwest. She partially disassembled and packed the slit-lamp. I scheduled a pickup with FedEx (not an easy task). When we unpacked the slit-lamp, I was very dismayed to find it was damaged--there was a 1/4 inch metal piece that was sheared in two, and there were some dents in the housing for the optics. It still worked, but I was upset that it wasn't "perfect" (with the way my life is, you might be tempted to think I would be over that by now...). I contacted the seller, and she agreed to refund my money right away.
Then we began the process of turning in a damage claim to FedEx. The situation was complicated by the fact that I, the buyer, had ordered the pick-up and payed for the shipping (normally the seller pays--this turn of events had all the customer service agents in a tizzy). FedEx wouldn't let me file the claim--they made the seller do it. But after she filed the claim, they made me write a letter releasing "my" reimbursement back to the seller. Then they had to inspect the damage to decide if they would pay. I thought that meant they would come by my office to look at the slit-lamp. Wrong--I had to repack it and send it back to FedEx "head-quarters." The inspector ruled that the equiment was not packed properly, but it doesn't really matter because if you read the fine print on the shipping order they do not honor any "Fragile" or "This Side Up" marks on the box. It also states that the item has to be packed well enough to not be damaged if it's dropped three feet (the distance between conveyer belts). I don't know why they even have a claim process--it's pretty obvious they have no intention of ever paying for any damage. My interpretation: don't send anything by FedEx you actually care about that is not replacable.
Evidently, the inspector assumed that no one gave a crap about the slit-lamp anymore, because they just threw all the pieces back in the box. FedEx attempted to deliver the box back to the selling optometrist, who during this time had closed her office. They called me and asked if I wanted it back--they would have just thrown it away--I said I'd take it. The box appeared again at my office 3 days later, looking every bit like it had been transported half-way across the country twice. It sat there for two weeks--it made my stomach hurt just thinking about what a waste it was.
Finally, I brought the slit lamp home. Jeremy opened up the box and it was really a mess--broken bits of plastic and glass, paint all scuffed up, housings dented... He didn't make any promises, but he said he'd "see" if he could fix it. The first thing he did was weld together the metal part that was broken--he sanded and painted it and you can't even tell it was ever broken. Then he reassembled and glued all the broken plastic parts. He realigned the optics. There are two parts that could not be repaired, and I'll have to see if I can order replacements. I still don't know if the lamp part works yet (the lightbulb was broken during one of the shippings), but it looks really good. Had I know he would be able to do such a good job, I would have cut my losses and just kept the slit-lamp in the first place.
I was absolutely amazed when I walked in through the door tonight. I know what love is...it's a man who is willing to spend 10 hours putting together a piece of equipment that most would write off as a lost cause because he knows how much his wife hates wasting and throwing things away. And I also know what shipping company I will NEVER use again as long as I live...as soon as I have some time, I am sending FedEx a complaint letter and am closing my newly opened office shipping account.
Tuesday, October 21, 2008
Pumpkin Patch
Evan's preschool class went to the pumpkin patch this morning. Daddy went along also.
Evan's first ride on the school bus (Jeremy takes him to school each morning, so this is all new to Evan)
Taking a break from pumpkin hunting (Evan was interested in the "orange balls" briefly)
Amazingly, Jeremy was able to take a class picture. Evan's interpreter, Jess, is sitting right behind Evan.
Evan's first ride on the school bus (Jeremy takes him to school each morning, so this is all new to Evan)
Taking a break from pumpkin hunting (Evan was interested in the "orange balls" briefly)
Amazingly, Jeremy was able to take a class picture. Evan's interpreter, Jess, is sitting right behind Evan.
Saturday, October 11, 2008
Tuesday, October 7, 2008
Happy Birthday McKenzie
Our neighbor McKenzie just turned 4 (she is an ex-26-weeker--18 ounces at birth!). She had a really fun birthday party at Kid's Castle in Yakima on Sunday, and Evan was invited. Kid's Castle is basically a giant McDonald's Playland, and it's in the back of a gymnatics center. There was open gym and a inflatable jumper for the kids to play on also. Evan had a blast. Jeremy and I will probably take him this winter--the activities are very similar to PT (and admission is way cheaper than a PT visit!). I took lots of pictures of Evan (and a few of the Birthday Girl as well).
Make a wish, McKenzie!
Evan's first time in a jumper...he didn't understand how to climb over to the slide part, but had fun crawling around the first "room."
Walking on one of the many trampolines (difficult because Evan didn't want me holding his hands, but that was one of the facility "rules"--I had to hold his hands if we were on together. By this point, I had given up and just carried him).
Rescue time--the foam blocks were swallowing Evan up.
These plastic snaky-things occupied Evan for long time. They were at the castle entrance--he played with them for at least 15 minutes before even venturing inside.
"Gingerbread Man"-ing it down the slide--this is how Evan looks in every picture we take of him on the slide. It cracks me up every time.
Time to go home. Evan assisted daddy with his shoes.
Make a wish, McKenzie!
Evan's first time in a jumper...he didn't understand how to climb over to the slide part, but had fun crawling around the first "room."
Walking on one of the many trampolines (difficult because Evan didn't want me holding his hands, but that was one of the facility "rules"--I had to hold his hands if we were on together. By this point, I had given up and just carried him).
Rescue time--the foam blocks were swallowing Evan up.
These plastic snaky-things occupied Evan for long time. They were at the castle entrance--he played with them for at least 15 minutes before even venturing inside.
"Gingerbread Man"-ing it down the slide--this is how Evan looks in every picture we take of him on the slide. It cracks me up every time.
Time to go home. Evan assisted daddy with his shoes.
Surgery...it didn't happen
Not surprisingly, the urologist opted to cancel Evan's surgery. His scheduler had enough notice she thought she would be able to move some kiddos scheduled later on in October to the large slot Evan vacated, meaning Evan could have their surgery time. So (fingers crossed), the surgery/MRI/CT/BAER could still happen this month. Evan you have to stay well this time--we all have to say well! We're all a bunch of sickies right now--mommy thinks she has a sinus bug, daddy has a cough and felt plain crummy all day today, and Evan looks to have an ear infection (some crusties coming out of his right ear).
Friday, October 3, 2008
Lessons
What a week...as always, full of lessons learned.
1) How close before a surgical procedure Evan will get sick (and he will--I swear it's a law that we have to reschedule at least once...) is inversely proportional to the number of months out we had to schedule the surgery. Next Tuesday was supposed to be his urology surgery, brain MRI, and BAER hearing tests. We haven't officially cancelled yet, but it's not looking good.
2) Even though he hadn't used it for over nine months, that still was not long enough to say Evan would never need oxygen again and turn all the tanks and regulator back to the medical supply company. After a restless night of lots of desats, Jeremy decided Evan needed oxygen for the weekend. It took Jeremy most of today to secure two small oxygen tanks from the welding supply store in town and a regulator from the hospital. I'm glad we have it, but it feels like a step backward (it felt good to be done with all that).
1) How close before a surgical procedure Evan will get sick (and he will--I swear it's a law that we have to reschedule at least once...) is inversely proportional to the number of months out we had to schedule the surgery. Next Tuesday was supposed to be his urology surgery, brain MRI, and BAER hearing tests. We haven't officially cancelled yet, but it's not looking good.
2) Even though he hadn't used it for over nine months, that still was not long enough to say Evan would never need oxygen again and turn all the tanks and regulator back to the medical supply company. After a restless night of lots of desats, Jeremy decided Evan needed oxygen for the weekend. It took Jeremy most of today to secure two small oxygen tanks from the welding supply store in town and a regulator from the hospital. I'm glad we have it, but it feels like a step backward (it felt good to be done with all that).
Lucas
Please keep our CHARGE friend Lucas' family in your throughts and prayers. He passed away yesterday. I did not know his mom, but she also kept a blog about her sweet little guy. I've been reading her old posts and looking at the pictures...Lucas' complications from CHARGE were a little bit different, but many things were so very similar.
This picture of Lucas sleeping in his exersaucer reminded me so much of Evan--not only do they have the same bendy ear, but Evan can fall asleep just about anywhere also.
This picture of Lucas sleeping in his exersaucer reminded me so much of Evan--not only do they have the same bendy ear, but Evan can fall asleep just about anywhere also.
CHARGE Get-Together
Last weekend, we hosted the semi-annual Washington state CHARGE Family get-together. It was fun to see how much Max, Burke, Maya and Evan have all grown since we've started doing this. I've posted a few of the pictures below--most of my pictures involve Evan's horse (this was the favorite toy, and one Evan doesn't mind sharing at all). Thanks for making the drive over to the East side this time--it was good to see everyone!
Burke knows all about spring horses--giddyup!
Max's turn.
As busy as these boys are, it's surprising I got them all in one shot.
Maya was very into Grandma Key's watch.
Are they gone yet?? I'm ready to have my house back now :)
Burke knows all about spring horses--giddyup!
Max's turn.
As busy as these boys are, it's surprising I got them all in one shot.
Maya was very into Grandma Key's watch.
Are they gone yet?? I'm ready to have my house back now :)
Thursday, September 25, 2008
Giving new meaning to the term "feeding tube"
So I think Evan has made the connection between his feeding tube and eating. It's going to take a pretty strong bite to get any food that way, Evan!
Thursday, September 18, 2008
Hand Washing
I don't know what happened to the little boy who 4 months ago was completely terrified of water. Evan loves playing in the water now. He will pull his step stool up in front of the bathroom sink and put his hands in the dry sink. Thankfully, he hasn't figured out how to turn on the faucet yet (Heaven help us when he does). When the water is on, he can make quite a mess! ***Update from daddy--as I was typing this, he figured out how to turn it on...
Getting ready to wash up...
Water, water squrting everywhere--such fun!
What--doesn't everyone get this wet after a thorough hand washing? You must not do as good of a job as I do.
PS Third day of school went well. Evan is very interested in the water fountain (are we surprised?). Daddy and J. are teaching Evan how to push the button and turn the water on. Evan licked the water today--the cold water must be very refreshing for someone who never has liquid in their mouth.
Getting ready to wash up...
Water, water squrting everywhere--such fun!
What--doesn't everyone get this wet after a thorough hand washing? You must not do as good of a job as I do.
PS Third day of school went well. Evan is very interested in the water fountain (are we surprised?). Daddy and J. are teaching Evan how to push the button and turn the water on. Evan licked the water today--the cold water must be very refreshing for someone who never has liquid in their mouth.
Wednesday, September 17, 2008
Choosing Socks
Evan picked out the pair of socks he wanted to wear this morning. Jeremy was folding laundry, and had a pile of Evan's socks on the bed. Evan picked up one pair at a time, and would throw the ones he didn't want off to the side. There was one pair he didn't toss away, and that was the pair he wanted to wear. He pulled the pair apart, and laid down with his feet in the air (that is his way of helping us put his socks on). The socks he chose were orange and blue stripes--didn't match the rest of his outfit at all--but I think that's a pretty standard wardrobe selection for a three year old.
PS Evan's second day of school went pretty well also. There were more kids in the class this morning, so the teachers were busy getting the new kids all settled in. Evan is getting used to J. very quickly--he crawled up to J. and wanted him to walk with him. It's going to be a great year for Evan--I just have a good feeling about it.
Jeremy had a close call with another g-tube incident--he discovered before leaving home this morning the mic-key button balloon had a tiny hole in it (that's why it deflated yesterday), so changed to a new button.
On to Day 3!
PS Evan's second day of school went pretty well also. There were more kids in the class this morning, so the teachers were busy getting the new kids all settled in. Evan is getting used to J. very quickly--he crawled up to J. and wanted him to walk with him. It's going to be a great year for Evan--I just have a good feeling about it.
Jeremy had a close call with another g-tube incident--he discovered before leaving home this morning the mic-key button balloon had a tiny hole in it (that's why it deflated yesterday), so changed to a new button.
On to Day 3!
Tuesday, September 16, 2008
First Day of Pre-School!
All in all, a very good day for Evan. I didn't want to jinx it by posting on the blog, but the special ed director at Kittitas told me last Friday they had a very promising candidate turn in an application to be Evan's aide. She interviewed him on Monday and he was at school this morning waiting to meet Evan. We feel very blessed that J. applied for the position--he is fluent in ASL and will be a wonderful example for Evan this year.
Jeremy stayed today (and is planning on staying all this week) to help with the transition for Evan. I came for the first half hour, and got to meet J., help Evan put his bag into his cubby, and take pictures commemorating the occasion! First was independent play--Evan is very good at this already, and seemed excited to find toys he has some familiarity with (they have a Busy Box--he was all over that).
Next was circle time. The lead teacher sang a roll-call song, and each child is supposed to come put their name card in the attendance board. Out of the 5 kiddos in class this morning, only 1 was able to do this--and he was in the class last year :) One of the teachers told Jeremy this is a fun way to see progress--at the beginning of the year, most of the kids can't do this task, but are able to by the end of the school year. The lead teacher attempted to read a story, but most of the kids were ready to move on. Evan stayed on the rug, rocking back and forth, but he stayed on the rug! I wondered how he would do with circle time...
They looked at books independently instead of group story, and then it was snack time (Evan got to play some more, since he can't eat the snack). Then the kids went to a different room that has gross-motor activities like swings and ramps. Evan really liked this room, and didn't want to transition to outside. Evan surprised daddy, when he hopped right into a little tykes car, shut the door, and pushed and steered his way around (our neighbor McKenzie has one of these, and Evan's sat in it before, but we had no idea he knew how to make it go).
Evan only had a small melt-down part of the way through the morning. Jeremy interrupted his play to change his diaper, and this made him mad and started building gas. When Jeremy vented the g-tube, Evan kicked his legs up around the vent tube and pulled the button half-way out (which made him even madder). Jeremy was able to get the balloon back in and Evan calmed down. Note to Max: We beat you, less than one day in school for a g-tube incident (ok--it didn't come all the way out, so not as bad).
Here are some pictures from this morning:
On our way out the door, with an apple for the teacher (Evan didn't want to touch it because it was cold)
Ready...set...let's go in!
Ahh...Busy Box! This is something I recognize and know exactly how to do.
Jeremy stayed today (and is planning on staying all this week) to help with the transition for Evan. I came for the first half hour, and got to meet J., help Evan put his bag into his cubby, and take pictures commemorating the occasion! First was independent play--Evan is very good at this already, and seemed excited to find toys he has some familiarity with (they have a Busy Box--he was all over that).
Next was circle time. The lead teacher sang a roll-call song, and each child is supposed to come put their name card in the attendance board. Out of the 5 kiddos in class this morning, only 1 was able to do this--and he was in the class last year :) One of the teachers told Jeremy this is a fun way to see progress--at the beginning of the year, most of the kids can't do this task, but are able to by the end of the school year. The lead teacher attempted to read a story, but most of the kids were ready to move on. Evan stayed on the rug, rocking back and forth, but he stayed on the rug! I wondered how he would do with circle time...
They looked at books independently instead of group story, and then it was snack time (Evan got to play some more, since he can't eat the snack). Then the kids went to a different room that has gross-motor activities like swings and ramps. Evan really liked this room, and didn't want to transition to outside. Evan surprised daddy, when he hopped right into a little tykes car, shut the door, and pushed and steered his way around (our neighbor McKenzie has one of these, and Evan's sat in it before, but we had no idea he knew how to make it go).
Evan only had a small melt-down part of the way through the morning. Jeremy interrupted his play to change his diaper, and this made him mad and started building gas. When Jeremy vented the g-tube, Evan kicked his legs up around the vent tube and pulled the button half-way out (which made him even madder). Jeremy was able to get the balloon back in and Evan calmed down. Note to Max: We beat you, less than one day in school for a g-tube incident (ok--it didn't come all the way out, so not as bad).
Here are some pictures from this morning:
On our way out the door, with an apple for the teacher (Evan didn't want to touch it because it was cold)
Ready...set...let's go in!
Ahh...Busy Box! This is something I recognize and know exactly how to do.
Saturday, September 13, 2008
Goodbye Kitt Kat
Kitt Kat still has not come home yet. It has been over two weeks now. I've looked along the sides of the road and have asked our neighbors--no luck. I even have the neighbor lady that feeds all the stray cats on the look out for him. I would like to think that someone took him, and he's enjoying a new family with lots of attention. Not knowing is the hardest part.
I saw a story on Yahoo about a cat that was returned to her owners after nine years of being gone. The cat had a microchip, so that's how the owners could be tracked down. Unfortunately, our cats do not have microchips (or collars).
Even though he could be pesky at times, Kitt Kat was a good cat. He liked to snuggle. I miss him. Snickers (our other cat) misses him too.
I saw a story on Yahoo about a cat that was returned to her owners after nine years of being gone. The cat had a microchip, so that's how the owners could be tracked down. Unfortunately, our cats do not have microchips (or collars).
Even though he could be pesky at times, Kitt Kat was a good cat. He liked to snuggle. I miss him. Snickers (our other cat) misses him too.
Daddy Walking
Even though Evan is a pretty efficient cruiser/walker now, his favorite mode of transportation around the house is daddy-assisted walking. He is very particular about how it's done too--if everything is not just how Evan wants it, he'll let you know. He might even perform one of the little feet-stomping fits he's started throwing lately (not being able to tell mom and dad what he wants frustrates him to the boil-over point sometimes).
Here are Evan's "Rules for Walking"
1. To begin with, the "helper" must be daddy. Maybe if daddy has been gone for a few hours, mommy will do...maybe. But if daddy is anywhere in the house, it has to be him. If mommy tries, I instantly turn into "Noodle Boy" and won't stand up.
2. Evan will only walk with daddy bending over him, so he is walking in front of Jeremy, between his legs. No walking along side daddy, and absolutely no walking between two parents. Try to walk any other way and, you guessed it--Noodle Boy returns. (Thank goodness Evan is getting taller, so Jeremy doesn't have to bend over so far now.)
3. Both hands must be held. Being able to grip the palm of the hand, underneath the thumb is critical. No thumb or finger holding is permitted. The hands cannot have any thing else in them. If you try to hold his hands any other way, he pulls them back and will sit down in a noodle-like fashion.
4. The preferred route is circular laps through the kitchen and living room in a counter-clockwise direction. Evan does not like walking in the clockwise direction--he will twist himself around to go the other way. He will walk to other parts of the house sometimes--but he really likes walking in circles best.
If you follow these rules, you will have one happy Evan. If you don't (or if you decide you are done for the night, and Evan isn't)...watch out!
Here are Evan's "Rules for Walking"
1. To begin with, the "helper" must be daddy. Maybe if daddy has been gone for a few hours, mommy will do...maybe. But if daddy is anywhere in the house, it has to be him. If mommy tries, I instantly turn into "Noodle Boy" and won't stand up.
2. Evan will only walk with daddy bending over him, so he is walking in front of Jeremy, between his legs. No walking along side daddy, and absolutely no walking between two parents. Try to walk any other way and, you guessed it--Noodle Boy returns. (Thank goodness Evan is getting taller, so Jeremy doesn't have to bend over so far now.)
3. Both hands must be held. Being able to grip the palm of the hand, underneath the thumb is critical. No thumb or finger holding is permitted. The hands cannot have any thing else in them. If you try to hold his hands any other way, he pulls them back and will sit down in a noodle-like fashion.
4. The preferred route is circular laps through the kitchen and living room in a counter-clockwise direction. Evan does not like walking in the clockwise direction--he will twist himself around to go the other way. He will walk to other parts of the house sometimes--but he really likes walking in circles best.
If you follow these rules, you will have one happy Evan. If you don't (or if you decide you are done for the night, and Evan isn't)...watch out!
Monday, September 8, 2008
Children's Check-Up
Evan had a bunch of follow-up appointments at Children's today. Most of them were through the Craniofacial clinic, although Evan's managing pediatrician was not available to see him today (as far as we're concerned, not the end of the world).
His dietitian was very pleased with Evan's growth--he weighed 30 lbs and measured 35 1/2 inches! Evan had been hovering around 27 lbs it seemed like forever. We had added an extra tablespoon of flax seed and olive oil to his blended mix. It finally helped. Evan has a mini gut over his waistband now (too cute!). I remeasured him at home because I didn't believe his height--it turned out he is around 35 inches, which is the same as I measured the week before is birthday. Most of the disbelief was the result of a math error on my part, which got me thinking Evan had grown 3 inches in 2 months (the blendarized diet is good, but not that good!). 3 feet does not equal 32 inches mommy!
Evan's ENT was pleasantly surprised to see an almost secretion-free Evan. Evan has his moments, up to this point they have never been while seeing this particular Dr. After Evan's upcoming surgery, he would like to discontinue the oral antibiotics and try Evan on a Bactrim/saline nasal spray. I'm sure the thinking is that localizing the antibiotic application to his nose is better than giving him a whole body dose with the oral med. But, the mucus membranes in the nose have a very rich blood supply--the Bactrim is going to go systemic anyway. Knowing what a fan Evan is of inhalers and nose sprays, meds through his g-tube are much less traumatic. But we'll give it a try and see what happens.
The speech therapist and orthodontist also checked in. We are all set for Evan's upcoming surgery date October 8th. Evan will be having a final urology procedure done, along with an MRI and BAER hearing test for his cochlear implant candidacy eval. Fingers crossed Evan stays well until then.
His dietitian was very pleased with Evan's growth--he weighed 30 lbs and measured 35 1/2 inches! Evan had been hovering around 27 lbs it seemed like forever. We had added an extra tablespoon of flax seed and olive oil to his blended mix. It finally helped. Evan has a mini gut over his waistband now (too cute!). I remeasured him at home because I didn't believe his height--it turned out he is around 35 inches, which is the same as I measured the week before is birthday. Most of the disbelief was the result of a math error on my part, which got me thinking Evan had grown 3 inches in 2 months (the blendarized diet is good, but not that good!). 3 feet does not equal 32 inches mommy!
Evan's ENT was pleasantly surprised to see an almost secretion-free Evan. Evan has his moments, up to this point they have never been while seeing this particular Dr. After Evan's upcoming surgery, he would like to discontinue the oral antibiotics and try Evan on a Bactrim/saline nasal spray. I'm sure the thinking is that localizing the antibiotic application to his nose is better than giving him a whole body dose with the oral med. But, the mucus membranes in the nose have a very rich blood supply--the Bactrim is going to go systemic anyway. Knowing what a fan Evan is of inhalers and nose sprays, meds through his g-tube are much less traumatic. But we'll give it a try and see what happens.
The speech therapist and orthodontist also checked in. We are all set for Evan's upcoming surgery date October 8th. Evan will be having a final urology procedure done, along with an MRI and BAER hearing test for his cochlear implant candidacy eval. Fingers crossed Evan stays well until then.
Tuesday, September 2, 2008
Pee Pee in the Potty Chair!
So this was more than a fluke than anything else, but Evan peed in his potty chair this morning.
Jeremy has discovered that Evan "holds it" during bath time, and he almost always will go on the bath mat while he is waiting for Jeremy to get out and dry him off (or the bedroom carpet the couple of times he was able to scamper off before Jeremy got to him).
Evan refuses to sit on his potty chair, but Jeremy got the idea to just stand him up in front of it this morning. And low and behold--he went! Most of it actually made it inside the potty chair too.
Jeremy said the look on Evan's face was priceless. He was evidently pretty surprised to discover exactly where pee comes from. And when he saw how happy and excited daddy was, he started grinning--pretty pleased with himself.
So Jeremy's new plan is to get Evan up in front to the big potty every morning as soon as he gets up (figuring it's a bigger target and a shorter distance, there will be a greater chance of success). We'll see how effective this "habbit training" is. We'll take any kind of potty training we can get!
Jeremy has discovered that Evan "holds it" during bath time, and he almost always will go on the bath mat while he is waiting for Jeremy to get out and dry him off (or the bedroom carpet the couple of times he was able to scamper off before Jeremy got to him).
Evan refuses to sit on his potty chair, but Jeremy got the idea to just stand him up in front of it this morning. And low and behold--he went! Most of it actually made it inside the potty chair too.
Jeremy said the look on Evan's face was priceless. He was evidently pretty surprised to discover exactly where pee comes from. And when he saw how happy and excited daddy was, he started grinning--pretty pleased with himself.
So Jeremy's new plan is to get Evan up in front to the big potty every morning as soon as he gets up (figuring it's a bigger target and a shorter distance, there will be a greater chance of success). We'll see how effective this "habbit training" is. We'll take any kind of potty training we can get!
Saturday, August 30, 2008
KItt Kat, Where are you?
One of our cats has been missing since Tuesday. Kitt Kat is extreamly friendly (borderline obnoxious), and he likes to make his rounds of the neighborhood for attention and possibly a snack. He has been gone for a night before--usually because he was accidentaly shut in the neighbor's garage--never this long. We went out looking for him yesterday afternoon, but no luck.
Baby Kitt Kat
Buddies
Come home soon...we miss you!
Baby Kitt Kat
Buddies
Come home soon...we miss you!
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