Lately, I really feel myself becoming "one" with the whole 'hippie' mentality I've laughed at over the many years I've spent in Oregon. Today, upon arriving early to the gym for my tri-weekly class I live for, I had Andi use her walker to 'walk' herself into the gym. Destination walking seems to motivate her. My plan initially was to have her use her walker to get in and out of the library to pick up a few Signing Time DVD's I have on hold. I should have known that something was amiss when I pulled up to the block and every spot on the block was available. I pulled in regardless, hopped out to get her walker out of the back, and saw the sign indicating library hours. Duh, they're closed. So, we used her walker on the sidewalk to the gym. It's an opportunity, and one the weather allowed. So, Andi walked into the gym today. Once through the door, she was greeted with her usual chorus of "Andi!" Sometimes I wonder if they know my name, but they all know Andi. Andi got even more attention using her walker. One man was sitting in a chair by the door. He was well over 300, maybe even 400 pounds (I have no idea), but he commented on how cool her wheels were and said that he might be using one of those devices soon. I just kind of nodded and concentrated on Andi, like I tend to do. But once I got her settled, I was more dumbfounded and fired-up about what that man said. Here's a man with what I ASSUME is a healthy body, just an unhealthy life. But anyway, that's not for me to judge. Hopefully seeing a kid struggle to walk will inspire others to get healthy, be well, and appreciate their health.
I've been making Andi walk with her walker as much as possible. She gets a lot of attention and praise, which only eggs her onward. The more she does it, the stronger she'll get, and hopefully soon it will enable her to stand on her own.
We had one of the other pediatrician's look at her left (unaided) ear, as when they looked at her ear on Friday - when she got her new hearing aid, they said that ear was "VERY red". Our usual Dr. is on rotation at the hospital this week, so we saw someone else we've seen a few times when we lived up at the hospital. This guy is really nice, and did well with Andi. He said the ear looked okay, but that the ear tube is just sitting there and should probably be pulled out by an ENT. He gave it one try to get it out, and couldn't. So, we are going back again on Friday to have an ENT remove it. So, that's $20. today, $20. Thursday for PT, $20. Friday, plus I paid $30. for our minimum payment on our balance. YIKES! That's an expensive week. Luckily, weeks like these are fewer now, but they still slash a big hole in my wallet. It could be worse.... I'll just leave it at that! :)
So, Miss Andi is charging forward hopefully promoting health and well-being to all she encounters. She certainly does catch the eyes of many, and is a rather big flirt. She also has GAINED weight! She weighed in today at 23 lbs, 5 oz's... so we're FINALLY out of the 22 lb, where we seemed stuck for SO long! YEA!
4th Birthday Photo Session
Tuesday, April 23, 2013
Thursday, April 18, 2013
Keeping Up With A Bean
Keeping up with a Bean, as well as this blog, is proving to be rather difficult. So much going on, and not enough hours in the day!
First of all, the roof is done!!! They only found $1100. of dry-rot to be replaced, so... well, at least it's done, and they're giving us 90 days to finish paying for it! YEA!
It seems like we've had a lot of appointments lately! I'm not sure if that's really true, but it seems like we have. This week we had the team from Portland Public Schools come evaluate Andi to transition her from the 0-3 year Early Intervention program to the 3-5 year program. As she's about to start pre-school, we need to line-up services she'll need and update her IFSP. We have the BIG transition meeting on May 8th, which will have a lot of people come together to make sure that "all T's are crossed and all i's dotted" and Andi will have everything she needs to access, succeed and thrive in pre-school. It has been said that after the paperwork is wrapped up from that meeting, Andi can start school even before her 3rd birthday! So, it is looking like she will start pre-school in mid-MAY! I'm so excited because everyone agrees with me, she will THRIVE in school. It will help her to see what other kids are doing, and might even encourage her to figure out walking quicker. I have a good feeling about it! The weird thing about all this, is after this transition meeting, we will basically be "released" by our 0-3 year old team - which means the people we've worked with since 10/10, will no longer be ours. So, our OT, Kajsa (kay-sah) whom Andi absolutely adores and can actually pronounce her name really well, will no longer be our weekly visitor. We seriously started working with Kajsa a month after Andi was released from the hospital from heart surgery, she was maybe five months old. Kajsa is seven months pregnant, so hopefully we'll get to spend some time with them this summer as "friends" instead of 'therapist'. But still... that part of this moving onward will likely be hard on us. These people come into our homes for an hour and see the good, the bad, the struggles, frustration, whining, worry, hardship, stress, fear, happiness, milestones, joy, humor, and share all of it as a part of the family. The expression of the 90's, "it takes a village to raise a kid"... well, these people are our village, more so than even our own extended family. These people have helped us shape, mold, stretch, grow, aid, teach and strengthen our Bean. It's going to be hard to let them go from our lives. I actually believe we'll keep up with them, but, it won't be as often as we've been seeing them.
Anyhow, tangent.... whoa! I guess I have some feelings about moving onward and upward! HA!
Tomorrow, we have our twice-monthly hearing impaired playgroup. This is held at the school where Andi will be going for pre-school! It's an opportunity for not only the kids to get together and realize 'they're not so different afterall' (anyone else singing a part of the song from 'Signing Time'?!?) but a place where parents can interact with other hearing impaired parents, and the teachers! There's one Mom there with three boys. The youngest is hearing impaired. All her boys are adorable and Andi likes to flirt with the oldest! She's someone I would hope to arrange play dates with down the road. I find that my social skills are extremely rusty in these instances though and I'm rather embarrassed by my shyness at times. I'm horrible about asking about others' kids and how other people are doing... I mainly speak when spoken to - which is rather shy of me. Maybe just by writing that here, maybe - just maybe, I'll do better tomorrow!
Anyhow, tomorrow afternoon we go up the hill to the hospital for Andi's 1st very-own hearing aid!!! Yes, we will finally give-up the lender hearing aid from Columbia Regional. We probably have to return our Signing Time videos we borrowed from the too. Oops. Luckily, we're getting them from the library now too.
And on that note, our exciting news is that Andi has taken the first steps toward potty-training!!! We've been watching the Potty Time (Signing Time) video for weeks, introduced the potty chair, and even read a Potty book we borrowed from the library. The stage has been set. So yesterday, I got her to sit on the potty for two hours. Two hours she sat there while we had Potty Time playing, toys to entertain, and a very full bladder. It took two hours but she finally went. The potty started talking to her (because it electronically registers that we've got a pay-day) and so we sang "celebrate" and made a big deal about it. She said "bye-bye potty" and we moved on with our day. Later that day she said "more potty" so we tried again, nothing. Then when Kajsa was here for our weekly session, Andi decided again to strip off her pants and diaper and "more potty". She likes to do the yoga pose 'downward dog' a lot from the potty. That basically shoots her bare butt in the air with her poop chute exposed for all to see. It's pretty funny if you're not disgusted with butt- chat like Daddy Bean is. (HAHAHAHAHA!) In any case, she did that several times yesterday, only to pop off the potty and "PP" on the rug. She doesn't yet have the body-awareness, but, she'll get there!!!!
On that note, I think I'll leave you all with the visual of naked baby downward dog pose. Cuz if you're going to keep up with a Bean, well, that's our latest!
First of all, the roof is done!!! They only found $1100. of dry-rot to be replaced, so... well, at least it's done, and they're giving us 90 days to finish paying for it! YEA!
It seems like we've had a lot of appointments lately! I'm not sure if that's really true, but it seems like we have. This week we had the team from Portland Public Schools come evaluate Andi to transition her from the 0-3 year Early Intervention program to the 3-5 year program. As she's about to start pre-school, we need to line-up services she'll need and update her IFSP. We have the BIG transition meeting on May 8th, which will have a lot of people come together to make sure that "all T's are crossed and all i's dotted" and Andi will have everything she needs to access, succeed and thrive in pre-school. It has been said that after the paperwork is wrapped up from that meeting, Andi can start school even before her 3rd birthday! So, it is looking like she will start pre-school in mid-MAY! I'm so excited because everyone agrees with me, she will THRIVE in school. It will help her to see what other kids are doing, and might even encourage her to figure out walking quicker. I have a good feeling about it! The weird thing about all this, is after this transition meeting, we will basically be "released" by our 0-3 year old team - which means the people we've worked with since 10/10, will no longer be ours. So, our OT, Kajsa (kay-sah) whom Andi absolutely adores and can actually pronounce her name really well, will no longer be our weekly visitor. We seriously started working with Kajsa a month after Andi was released from the hospital from heart surgery, she was maybe five months old. Kajsa is seven months pregnant, so hopefully we'll get to spend some time with them this summer as "friends" instead of 'therapist'. But still... that part of this moving onward will likely be hard on us. These people come into our homes for an hour and see the good, the bad, the struggles, frustration, whining, worry, hardship, stress, fear, happiness, milestones, joy, humor, and share all of it as a part of the family. The expression of the 90's, "it takes a village to raise a kid"... well, these people are our village, more so than even our own extended family. These people have helped us shape, mold, stretch, grow, aid, teach and strengthen our Bean. It's going to be hard to let them go from our lives. I actually believe we'll keep up with them, but, it won't be as often as we've been seeing them.
Anyhow, tangent.... whoa! I guess I have some feelings about moving onward and upward! HA!
Tomorrow, we have our twice-monthly hearing impaired playgroup. This is held at the school where Andi will be going for pre-school! It's an opportunity for not only the kids to get together and realize 'they're not so different afterall' (anyone else singing a part of the song from 'Signing Time'?!?) but a place where parents can interact with other hearing impaired parents, and the teachers! There's one Mom there with three boys. The youngest is hearing impaired. All her boys are adorable and Andi likes to flirt with the oldest! She's someone I would hope to arrange play dates with down the road. I find that my social skills are extremely rusty in these instances though and I'm rather embarrassed by my shyness at times. I'm horrible about asking about others' kids and how other people are doing... I mainly speak when spoken to - which is rather shy of me. Maybe just by writing that here, maybe - just maybe, I'll do better tomorrow!
Anyhow, tomorrow afternoon we go up the hill to the hospital for Andi's 1st very-own hearing aid!!! Yes, we will finally give-up the lender hearing aid from Columbia Regional. We probably have to return our Signing Time videos we borrowed from the too. Oops. Luckily, we're getting them from the library now too.
And on that note, our exciting news is that Andi has taken the first steps toward potty-training!!! We've been watching the Potty Time (Signing Time) video for weeks, introduced the potty chair, and even read a Potty book we borrowed from the library. The stage has been set. So yesterday, I got her to sit on the potty for two hours. Two hours she sat there while we had Potty Time playing, toys to entertain, and a very full bladder. It took two hours but she finally went. The potty started talking to her (because it electronically registers that we've got a pay-day) and so we sang "celebrate" and made a big deal about it. She said "bye-bye potty" and we moved on with our day. Later that day she said "more potty" so we tried again, nothing. Then when Kajsa was here for our weekly session, Andi decided again to strip off her pants and diaper and "more potty". She likes to do the yoga pose 'downward dog' a lot from the potty. That basically shoots her bare butt in the air with her poop chute exposed for all to see. It's pretty funny if you're not disgusted with butt- chat like Daddy Bean is. (HAHAHAHAHA!) In any case, she did that several times yesterday, only to pop off the potty and "PP" on the rug. She doesn't yet have the body-awareness, but, she'll get there!!!!
On that note, I think I'll leave you all with the visual of naked baby downward dog pose. Cuz if you're going to keep up with a Bean, well, that's our latest!
Saturday, March 30, 2013
Sunshine
Not only does the g-tube NOT leak, but it's seemingly completely healed. Andi is doing great! She is plugging along, learning new words every single day. She's learning them quicker and repeating them even more often. She's starting to really put words together too. 'Hi Dad! How are you?' "Where's Ashley?" (her favorite gal at Kid's Camp @ the gym.) So, things are going really well. We're trying to work on walking. Yesterday we walked down the street to say "hi" to the trees. Yes, we're destination walkers. Gotta have a goal to strive for. She walked halfway there with her walker, and the rest of the way holding onto my hands. I figure whatever way we get there, the more she does it, the stronger she'll get. I haven't noticed huge changes, but I did see something new yesterday. I sat her on one of her three riding toy and we saw her actually proper herself forward using her feet. I know that sounds pretty inconsequential, but actually, that's a pretty big deal. She's getting stronger.
She had a cold a week or two ago, but that has finally gone. Today, is by far the nicest weather day we've had since last summer. I got the lawn mowed and some trimming done while Andi naps. I would be out there now doing a bit more, but that requires some items from the garage. And... well, when I went out there last time, I saw what I thought was a mouse. Upon discussing it and it's size, we've determined that it was a rat. It's just walking around my horribly cluttered garage, like a scene out of Hoarders or such. I'm so completely grossed out, I probably won't be going in there to clean it out anytime soon. Ewh!
We've signed the contract to have our new roof, insulation & gutters done. There are a lot of repairs to be done to the wood supports. It's gonna hurt the finances bad, but, it HAS to be done. Hoping it is smooth sailing with no hidden surprises. Otherwise, I think I'll implode. So, here's hoping that all goes without a hitch! We could use just a little more good luck! :)
Ooh, lil' bit is waking from her nap! Time to go enjoy the sunshine!
She had a cold a week or two ago, but that has finally gone. Today, is by far the nicest weather day we've had since last summer. I got the lawn mowed and some trimming done while Andi naps. I would be out there now doing a bit more, but that requires some items from the garage. And... well, when I went out there last time, I saw what I thought was a mouse. Upon discussing it and it's size, we've determined that it was a rat. It's just walking around my horribly cluttered garage, like a scene out of Hoarders or such. I'm so completely grossed out, I probably won't be going in there to clean it out anytime soon. Ewh!
We've signed the contract to have our new roof, insulation & gutters done. There are a lot of repairs to be done to the wood supports. It's gonna hurt the finances bad, but, it HAS to be done. Hoping it is smooth sailing with no hidden surprises. Otherwise, I think I'll implode. So, here's hoping that all goes without a hitch! We could use just a little more good luck! :)
Ooh, lil' bit is waking from her nap! Time to go enjoy the sunshine!
Tuesday, March 12, 2013
Ding Dong, The G-Tube Is Gone!!!!
Yesterday, we awoke and raced around prepping for our big-time appointment. I threw Andi, well, not really 'threw' her, into the tub for what I thought might be her last bath for awhile. We got cleaned up and out the door. We stopped at the grocery store to pick up some cake, a balloon and party-gifts for the Dr. & nurse. We raced to our appointment and by this time, Andi was pretty upset. She was whiny, clingy and crying. She made me wonder if the previous nights' dinner was upsetting her tummy. So, by the time we got checked in and awaiting our turn at suite 1, Andi was pretty agitated. She had been crying, turning her cheeks & eyes red. Maybe my enthusiasm was a bit too much for her, I don't know. I tried my best to secure a great mood of celebration, but, that is not what we got, at all.
The nurse, whom we adore, is 36 weeks pregnant with her second child. She has told us on numerous occasions that the one thing she was looking forward to all day was seeing Andi. She is a huge fan of Andi Bean, and has even shown up with the pediatrician to see Andi off to one of her seven surgeries. Although, I can't remember which one. I think it was #5, which was sealing up the leaky g-tube, putting in a central line for TPN, blood draws and med's - while we waited a good week for the stomach to heal. Andi fell asleep in her arms, which is how we saw her off to that surgery. Precious. So, we brought her a really small baby gift. She's having a boy, and so I found a dinosaur themed outfit, there's a dinosaur on the butt of the pants, and the onesie says, 'My Momma Rocks' or something like that. That spoke to me, because she's been an amazing friend to Andi and me. We also brought cupcakes. They were ugly in a thick green frosting, but on top of each cupcake was a Mickey Mouse ring, which spoke to me. Andi's becoming more fond of Mickey Mouse. I figured the ring might be a good distraction. So, Andi is crying for the nurse, although she'd take breaks from the wailing to entertain something the nurse had to say. Then, the Dr. peeks in and says he'll be a minute. "No problem!" I go back to my constant in the pediatricians' office, calming a Bean. We sing songs, quiz about anything, and even play a lame game of 'pretty baby in the mirror!'. She likes to see herself in the mirror and sometimes, that really squashes a bad mood. The pediatrician comes back in and makes a joke about me not wanting to take out the g-tube that day. I don't even think I laughed at all, but was still in celebratory mode, despite Andi's bad mood. He reminded me that I could have done this myself. I agreed and said, 'yeah, but I wanted the hole symbolism of doing it here with you guys', as we were FINALLY closing a VERY long chapter. It seemed only right to do it together with them. I can't even count how many times I went to appointments just about the g-tube, whether it was the leak, the puking, the acid-burnt skin, etc. It's been too many to count! After he took out the g-tube, he put a little silver nitrate on the hole to help stimulate it to close. Taking out a g-tube is nothing more than using a special syringe, attaching it to the balloon port, and drawing the water out of the balloon. Then it slides out. It's pretty dang simple, honestly. It's gross, but it's simple.
So, here's a before/after of the g-tube removal. Again, Andi's only crying because she was in her pediatrician's office and she was probably pretty sick of my super-hyper, over-the-top enthusiasm cheering on this moment...
Now we just have to hope the hole closes up on its own. We have six weeks to watch for that. If it doesn't close, then they will have to go in and surgically close it. Apparently, it's a pretty intricate surgery and will require a few nights stay in the hospital. I interrupted him when he was telling me about it, because honestly, I thought I heard him say $1500., which is what I told him. As he started to continue about the hospitalization, I repeated, 'all I can hear you say is $1500.' This is said despite the fact that he didn't say anything about cost. That's just what I heard. I am probably a little too vocal about cost, but I don't care.
So far, we haven't really had much leakage, not like the first g-tube. I have kept gauze on it and when I change it, the secretions are minimal. The Dr. said I could give her a bath whenever. He actually encouraged it saying that it would be good to help with healing.
This morning we went to observe Andi's future preschool. Andi is going to go to a hearing-impaired preschool when she turns three. We got to see how the kids come in on the bus, line up, march to class and the routine of their day. It was really super cool and I'm anxious to get her started. I know an environment like this is exactly what Andi needs to help her take off. We have our Early Intervention evaluation to come up with her game plan for ages 3-5. So, it's likely Andi will go to preschool four days a week, from 8:30 - 11 a.m. It might start right after her birthday, for two weeks, or we might have to wait until July. I am hoping we can get those two extra weeks before they go on break, because I know Andi... she is going to grow leaps and bounds being surrounded by other kids, seeing what they do, and it will challenge her in ways I cannot. I'm super thrilled at these new chapters lurking before us. Beyond thrilled!
The nurse, whom we adore, is 36 weeks pregnant with her second child. She has told us on numerous occasions that the one thing she was looking forward to all day was seeing Andi. She is a huge fan of Andi Bean, and has even shown up with the pediatrician to see Andi off to one of her seven surgeries. Although, I can't remember which one. I think it was #5, which was sealing up the leaky g-tube, putting in a central line for TPN, blood draws and med's - while we waited a good week for the stomach to heal. Andi fell asleep in her arms, which is how we saw her off to that surgery. Precious. So, we brought her a really small baby gift. She's having a boy, and so I found a dinosaur themed outfit, there's a dinosaur on the butt of the pants, and the onesie says, 'My Momma Rocks' or something like that. That spoke to me, because she's been an amazing friend to Andi and me. We also brought cupcakes. They were ugly in a thick green frosting, but on top of each cupcake was a Mickey Mouse ring, which spoke to me. Andi's becoming more fond of Mickey Mouse. I figured the ring might be a good distraction. So, Andi is crying for the nurse, although she'd take breaks from the wailing to entertain something the nurse had to say. Then, the Dr. peeks in and says he'll be a minute. "No problem!" I go back to my constant in the pediatricians' office, calming a Bean. We sing songs, quiz about anything, and even play a lame game of 'pretty baby in the mirror!'. She likes to see herself in the mirror and sometimes, that really squashes a bad mood. The pediatrician comes back in and makes a joke about me not wanting to take out the g-tube that day. I don't even think I laughed at all, but was still in celebratory mode, despite Andi's bad mood. He reminded me that I could have done this myself. I agreed and said, 'yeah, but I wanted the hole symbolism of doing it here with you guys', as we were FINALLY closing a VERY long chapter. It seemed only right to do it together with them. I can't even count how many times I went to appointments just about the g-tube, whether it was the leak, the puking, the acid-burnt skin, etc. It's been too many to count! After he took out the g-tube, he put a little silver nitrate on the hole to help stimulate it to close. Taking out a g-tube is nothing more than using a special syringe, attaching it to the balloon port, and drawing the water out of the balloon. Then it slides out. It's pretty dang simple, honestly. It's gross, but it's simple.
So, here's a before/after of the g-tube removal. Again, Andi's only crying because she was in her pediatrician's office and she was probably pretty sick of my super-hyper, over-the-top enthusiasm cheering on this moment...
Now we just have to hope the hole closes up on its own. We have six weeks to watch for that. If it doesn't close, then they will have to go in and surgically close it. Apparently, it's a pretty intricate surgery and will require a few nights stay in the hospital. I interrupted him when he was telling me about it, because honestly, I thought I heard him say $1500., which is what I told him. As he started to continue about the hospitalization, I repeated, 'all I can hear you say is $1500.' This is said despite the fact that he didn't say anything about cost. That's just what I heard. I am probably a little too vocal about cost, but I don't care.
So far, we haven't really had much leakage, not like the first g-tube. I have kept gauze on it and when I change it, the secretions are minimal. The Dr. said I could give her a bath whenever. He actually encouraged it saying that it would be good to help with healing.
This morning we went to observe Andi's future preschool. Andi is going to go to a hearing-impaired preschool when she turns three. We got to see how the kids come in on the bus, line up, march to class and the routine of their day. It was really super cool and I'm anxious to get her started. I know an environment like this is exactly what Andi needs to help her take off. We have our Early Intervention evaluation to come up with her game plan for ages 3-5. So, it's likely Andi will go to preschool four days a week, from 8:30 - 11 a.m. It might start right after her birthday, for two weeks, or we might have to wait until July. I am hoping we can get those two extra weeks before they go on break, because I know Andi... she is going to grow leaps and bounds being surrounded by other kids, seeing what they do, and it will challenge her in ways I cannot. I'm super thrilled at these new chapters lurking before us. Beyond thrilled!
Tuesday, February 26, 2013
Catching Up & Making Plans!
So much going on and no writing about it... uhmmm, that's lame!
First of all, we've started a new schedule in our household. We, now including Andi, are all getting up by 6:30 a.m., trying to fix her daily fight against the nap. It's seemingly working better, although not every day. She goes down for a nap at 1 p.m.-ish, and then back down for the night at 8 p.m., if we're lucky. I'm trying to create more structure and activities, but dang, some days I just stink at it. Ideally, I'd be up in her face all the time engaging her in activities. Playing with the play-dough, coloring, reading books. More often than not, I fail. It's my goal to work at that more so, and not have her just sit with the IPad while I get my work done.
We went to PT yesterday, and that was great. However, not because of the appointment, but the time we killed on campus prior to the appointment. I brought her walker with us and made use of the open space that we do not have at home. I carried Andi and her walker across the parking lot. From there, we stopped off at the mailbox to mail a few items that have been riding around in my truck for a week, because I can't seem to make a stop at our neighborhood post-office. Then, I placed her in front of her walker and she made the long walk (maybe 75 yards, ...as I think it was a partial 9-iron shot, and that's how I gauge distance... my rusty golf game!) to the building of the day. Then, once inside and on the correct floor, we walked the long hallways and to the play table, where we normally wait for our therapists. We still had some extra time, so I encouraged her to walk with me down the hallway to and from the bathroom, which she did! It was AWESOME!!! It gave me confidence to take her "mall walking" whenever we can make it happen, so she can really stretch her legs and improve her strength and her own confidence to walk. Now, it's just a matter of when!? But, that's my new goal and I hope to "dazzle" our PT next month when we meet with her again. Andi was tired during her PT appointment, but the therapist was impressed with her improved strength and determination.
Today, we went up to OHSU to meet with their Audiology team. I think I saw Andi's first ENT surgeon walking through the waiting area, but wasn't positive it was him -- as usually, we saw him in scrubs and a hat. I wasn't sure he'd remember us, although I've sent him cards with updates, and even brought him a banana bread two years ago. He might not remember the cards, but the banana bread was received with much enthusiasm! So, anyway, we were referred to see the OHSU Audiology people to start the process of getting Andi her very first hearing aid that we'll own. I told them I was in no particular hurry to order it since I'm in dire need of a new roof, and the nice people at Columbia Regional said I could continue with the loaner awhile longer. We agreed on early June. We got a new ear mold done, ordered our color battery ("champagne") and her ear mold will be pink glitter. For those of us that knew me two years and seven months ago, stop laughing... yes, "we" do pink now. Whatevah! After what we've been through, I realized that life NEEDS more color, and although I used to HATE, I mean, H-A-T-E the color pink and all it's "pretty girl" connotations, and how little girls have to wear pink and boys wear blue... well, all that anger and animosity has fallen away because, well, look at her and what she's tackled. Yep, life needs more color. After we returned home and into the second hour of Andi's refusal to take a nap (a fight to which she eventually succumbed), my phone rings and it's the Audiologist assistant calling to schedule our fitting and follow-up. She said that it turns out that our out-of-pocket portion is only $200., and not $400., so we scheduled the fitting for April and the follow-up for May. Thank goodness, yet again, for our good insurance! Although, I did receive my latest Kaiser bill wanting $550. for past services/co-pays. Part of that bill is our co-pay on her T&A last year, and this years' out-of-pocket deductible fun. Y-e-a-h. So, win some, lose some, eh?
Hopefully, I'm making sense. I'm completely distracted by Daddy Bean loudly singing (I'm downstairs, while they are upstairs!) 'The Alphabet Song' while pounding on Andi's piano. It's completely adorable. [Don't Tell On Me For Telling!!!] It's my "night off!" and since I'm trying not to spend money, on a chronic diet, and am staying away from "The Jesus Juice"... wowza, I've sequestered myself downstairs for a few minutes "away!" Tis the life, eh? I'm sure many are jealous of this glamorous life!!!! ...Seriously, I'm lucky I can sneak away... not everyone gets afforded that opportunity! *Thankful!*
Tomorrow, OT is coming to our house for our almost weekly appointment. I hope to steal away some "mall walking" time and some pool time tomorrow. It's tough to carve out hours for all this, but, if I can do at least one... I'll consider it a successful day.
Now we've moved onto a special rendition of "Hey Jude"... 'nah, nah, nah, nah, nah, nah, nah ... Hey Cub!' ...LOL!!!
This evening we did a 'FaceTime' session with Poppa B & Ginga. Andi took one look at my Dad, she said & signed "ice cream". Totally cracks me up. She has words that she associates with certain people. With Poppa: ice cream; Ginga: bubble bath. I'll have to continue to think of what else she does. If someone taught her something or did something with her a lot... that's their word. It's pretty cute.
Two weeks ago, we met our OT, and PT consult, at a place called Play Date PDX. This place was a little kids paradise. Jungle gym for toddlers, super fast slides, and all sorts of fun. They serve food and even adult beverages there, so Real Housewives of Portland can go get their chardonnay on, while the kids try not to get bloody noses racing down the slide. In any case, it was awesome. Andi was hungry, as we'd just come from feeding/speech appointment. So, I got her a plate of cheeseburger sliders, cucumber & hummus, and chocolate milk. She did not like the sliders, but instead preferred the cucumber & hummus. Yes Dad, your grand-daughter really likes hummus! :) I laughed and told the therapists, 'no wonder my kid won't put on weight... she prefers vegetables!' Daddy Bean said she takes after him. I helped her with those sliders... and wonder why I can't lose a pound!!!?!? oops. Anyhow, the place was super cool. We hit it just as most people had left for nap-time. Now that we're trying to get on everyone else's schedule, that hour won't work for us either anymore, but, I really dug that it wasn't too crowded and thus, overwhelming for her on her first visit. The PT consult (a quarterly bonus from Early Intervention), hadn't seen Andi in quite awhile as she's been on maternity leave. She was BLOWN AWAY by how much Andi has changed and grown. She was seriously impressed. It's SO nice to get geniuine feedback from professionals like that!
While I've hidden down here long enough. I've rambled on and on... so, may I remember not to go so long without an update again.
13 days until the g-tube is removed!
First of all, we've started a new schedule in our household. We, now including Andi, are all getting up by 6:30 a.m., trying to fix her daily fight against the nap. It's seemingly working better, although not every day. She goes down for a nap at 1 p.m.-ish, and then back down for the night at 8 p.m., if we're lucky. I'm trying to create more structure and activities, but dang, some days I just stink at it. Ideally, I'd be up in her face all the time engaging her in activities. Playing with the play-dough, coloring, reading books. More often than not, I fail. It's my goal to work at that more so, and not have her just sit with the IPad while I get my work done.
We went to PT yesterday, and that was great. However, not because of the appointment, but the time we killed on campus prior to the appointment. I brought her walker with us and made use of the open space that we do not have at home. I carried Andi and her walker across the parking lot. From there, we stopped off at the mailbox to mail a few items that have been riding around in my truck for a week, because I can't seem to make a stop at our neighborhood post-office. Then, I placed her in front of her walker and she made the long walk (maybe 75 yards, ...as I think it was a partial 9-iron shot, and that's how I gauge distance... my rusty golf game!) to the building of the day. Then, once inside and on the correct floor, we walked the long hallways and to the play table, where we normally wait for our therapists. We still had some extra time, so I encouraged her to walk with me down the hallway to and from the bathroom, which she did! It was AWESOME!!! It gave me confidence to take her "mall walking" whenever we can make it happen, so she can really stretch her legs and improve her strength and her own confidence to walk. Now, it's just a matter of when!? But, that's my new goal and I hope to "dazzle" our PT next month when we meet with her again. Andi was tired during her PT appointment, but the therapist was impressed with her improved strength and determination.
Today, we went up to OHSU to meet with their Audiology team. I think I saw Andi's first ENT surgeon walking through the waiting area, but wasn't positive it was him -- as usually, we saw him in scrubs and a hat. I wasn't sure he'd remember us, although I've sent him cards with updates, and even brought him a banana bread two years ago. He might not remember the cards, but the banana bread was received with much enthusiasm! So, anyway, we were referred to see the OHSU Audiology people to start the process of getting Andi her very first hearing aid that we'll own. I told them I was in no particular hurry to order it since I'm in dire need of a new roof, and the nice people at Columbia Regional said I could continue with the loaner awhile longer. We agreed on early June. We got a new ear mold done, ordered our color battery ("champagne") and her ear mold will be pink glitter. For those of us that knew me two years and seven months ago, stop laughing... yes, "we" do pink now. Whatevah! After what we've been through, I realized that life NEEDS more color, and although I used to HATE, I mean, H-A-T-E the color pink and all it's "pretty girl" connotations, and how little girls have to wear pink and boys wear blue... well, all that anger and animosity has fallen away because, well, look at her and what she's tackled. Yep, life needs more color. After we returned home and into the second hour of Andi's refusal to take a nap (a fight to which she eventually succumbed), my phone rings and it's the Audiologist assistant calling to schedule our fitting and follow-up. She said that it turns out that our out-of-pocket portion is only $200., and not $400., so we scheduled the fitting for April and the follow-up for May. Thank goodness, yet again, for our good insurance! Although, I did receive my latest Kaiser bill wanting $550. for past services/co-pays. Part of that bill is our co-pay on her T&A last year, and this years' out-of-pocket deductible fun. Y-e-a-h. So, win some, lose some, eh?
Hopefully, I'm making sense. I'm completely distracted by Daddy Bean loudly singing (I'm downstairs, while they are upstairs!) 'The Alphabet Song' while pounding on Andi's piano. It's completely adorable. [Don't Tell On Me For Telling!!!] It's my "night off!" and since I'm trying not to spend money, on a chronic diet, and am staying away from "The Jesus Juice"... wowza, I've sequestered myself downstairs for a few minutes "away!" Tis the life, eh? I'm sure many are jealous of this glamorous life!!!! ...Seriously, I'm lucky I can sneak away... not everyone gets afforded that opportunity! *Thankful!*
Tomorrow, OT is coming to our house for our almost weekly appointment. I hope to steal away some "mall walking" time and some pool time tomorrow. It's tough to carve out hours for all this, but, if I can do at least one... I'll consider it a successful day.
Now we've moved onto a special rendition of "Hey Jude"... 'nah, nah, nah, nah, nah, nah, nah ... Hey Cub!' ...LOL!!!
This evening we did a 'FaceTime' session with Poppa B & Ginga. Andi took one look at my Dad, she said & signed "ice cream". Totally cracks me up. She has words that she associates with certain people. With Poppa: ice cream; Ginga: bubble bath. I'll have to continue to think of what else she does. If someone taught her something or did something with her a lot... that's their word. It's pretty cute.
Two weeks ago, we met our OT, and PT consult, at a place called Play Date PDX. This place was a little kids paradise. Jungle gym for toddlers, super fast slides, and all sorts of fun. They serve food and even adult beverages there, so Real Housewives of Portland can go get their chardonnay on, while the kids try not to get bloody noses racing down the slide. In any case, it was awesome. Andi was hungry, as we'd just come from feeding/speech appointment. So, I got her a plate of cheeseburger sliders, cucumber & hummus, and chocolate milk. She did not like the sliders, but instead preferred the cucumber & hummus. Yes Dad, your grand-daughter really likes hummus! :) I laughed and told the therapists, 'no wonder my kid won't put on weight... she prefers vegetables!' Daddy Bean said she takes after him. I helped her with those sliders... and wonder why I can't lose a pound!!!?!? oops. Anyhow, the place was super cool. We hit it just as most people had left for nap-time. Now that we're trying to get on everyone else's schedule, that hour won't work for us either anymore, but, I really dug that it wasn't too crowded and thus, overwhelming for her on her first visit. The PT consult (a quarterly bonus from Early Intervention), hadn't seen Andi in quite awhile as she's been on maternity leave. She was BLOWN AWAY by how much Andi has changed and grown. She was seriously impressed. It's SO nice to get geniuine feedback from professionals like that!
While I've hidden down here long enough. I've rambled on and on... so, may I remember not to go so long without an update again.
13 days until the g-tube is removed!
Tuesday, February 12, 2013
PROcrastinating...
I just caught myself totally procrastinating my work project. It was pathetic. I uploaded a few titles, then shopped for flights on Hotwire - fantasizing about rescheduling our girl's weekend get-away (that the cheapo airline canceled all flights to our destination!) Then I added one or two more, yawned, and then found myself distracted by something else. I'm super duper tired and I find myself PRO-crastinating, cuz I'm a "pro" at it!
Daddy Bean returns tonight from a two-night work trip. Andi has been a bit of a handful, and I'm rather tired. Luckily, she went down today for a nap on her own, so I'm thankful for a bit of reprieve from Mommyhood.
I have SO much to do, and the yawns are pretty constant. I think it's time to fire up a cup of coffee so I can better utilize my "quiet" time!
...29 more days!!! YIPPIE!!!!
Daddy Bean returns tonight from a two-night work trip. Andi has been a bit of a handful, and I'm rather tired. Luckily, she went down today for a nap on her own, so I'm thankful for a bit of reprieve from Mommyhood.
I have SO much to do, and the yawns are pretty constant. I think it's time to fire up a cup of coffee so I can better utilize my "quiet" time!
...29 more days!!! YIPPIE!!!!
Monday, February 11, 2013
A Date Has Been Set
3/11/13, we are returning to Andi's pediatrician for the official g-tube removal. We are going to pull it and he thinks it will close-up on its own. There might be a bit of leakage, but... hopefully it will close up quickly. Her weight is still pretty low, but, it will have been three months that she's been completely orally fed, and they feel that's enough time. However, if I really wanted it pulled today - he probably would've done it. I was lavished with praise at how well she's doing, which was really cool to hear from a medical professional.
Andi has her third sickness of the year. Yeah, it's only February 11th. She has another cold. We think she keeps getting germs from the Kid's Club at the gym, or at the hearing impaired playgroup. Those are the only two places I can think of where she is exposed to different things. I use hand-sanitizer after each session, but obviously, it's not working for us. We also are going to start forcing a nap during the day. She's been in her bed for an hour, and is still having a party. Now I will take her downstairs and cuddle her, which usually settles her into slumber. It's just a PITA to do that, and it doesn't always work. But, I have many, many hours of work to do and a personal To-Do list that is a mile long, and a sick kid - therefore, it must happen.
So, thirty days and I have one less thing that really keeps me in a state of worry, i.e. it getting pulled out or caught on something, or kids teasing her. I still need to get her weight up, that's still lagging, but we're about to try this new high-calorie pudding recipe. If it works, a 1/2 cup of it is around 550 calories, that's almost 1/2 her daily need. So, we'll see if we can get this to help. I bought the stuff at the high-end ($$$) market because it was convenient, and I wanted to get a build-your-own salad. So, I bought the ingredients, I went for the "organic" crap and I think I bought the wrong type of gelatin. We'll see. Needless to say, I spent my whole week's grocery budget on this one trip. Oops.
Andi's vitals @ 32 months:
Height: 2' 9" (1.14%)
Weight: 21 lb, 2 oz (0.04%) --> she did not eat much this morning prior to weigh-in
Head Circumference: 17.99" (4.38%)
(sing-along)
It's nap-time
nap-time.
Time to force a nap...
Time to force a nap...
ugh. Here we go, wish me luck!
Andi has her third sickness of the year. Yeah, it's only February 11th. She has another cold. We think she keeps getting germs from the Kid's Club at the gym, or at the hearing impaired playgroup. Those are the only two places I can think of where she is exposed to different things. I use hand-sanitizer after each session, but obviously, it's not working for us. We also are going to start forcing a nap during the day. She's been in her bed for an hour, and is still having a party. Now I will take her downstairs and cuddle her, which usually settles her into slumber. It's just a PITA to do that, and it doesn't always work. But, I have many, many hours of work to do and a personal To-Do list that is a mile long, and a sick kid - therefore, it must happen.
So, thirty days and I have one less thing that really keeps me in a state of worry, i.e. it getting pulled out or caught on something, or kids teasing her. I still need to get her weight up, that's still lagging, but we're about to try this new high-calorie pudding recipe. If it works, a 1/2 cup of it is around 550 calories, that's almost 1/2 her daily need. So, we'll see if we can get this to help. I bought the stuff at the high-end ($$$) market because it was convenient, and I wanted to get a build-your-own salad. So, I bought the ingredients, I went for the "organic" crap and I think I bought the wrong type of gelatin. We'll see. Needless to say, I spent my whole week's grocery budget on this one trip. Oops.
Andi's vitals @ 32 months:
Height: 2' 9" (1.14%)
Weight: 21 lb, 2 oz (0.04%) --> she did not eat much this morning prior to weigh-in
Head Circumference: 17.99" (4.38%)
(sing-along)
It's nap-time
nap-time.
Time to force a nap...
Time to force a nap...
ugh. Here we go, wish me luck!
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