Wednesday, December 31, 2008
Friday, December 26, 2008
But some days I just think how unfair life can be. She was born at 36 weeks, with no known trauma. She was the product of a non-smoking, non-druggie mom. I did everything right, and everything seemed fine.
It's obviously not, and no one can tell me why. She doesn't really have cerebral palsy, but the doctors have given up and called it that in order to give it a name. No one can tell me "what she has". We know she has a metabolic disorder and microcephaly and encephalopathy. That doesn't explain what happened however. It is so frustrating!
A good friend of mine came over today with her kids. She has a 2.5 year old who was a micro-preemie. She was born at 24 weeks and weighed 1lb 9oz. She was tiny and not expected to survive. She is blind and delayed, and has cerebral palsy. She is tube-fed, but started eating a month or so ago. She now takes yogurt and baby food by mouth. She also started walking this week. This is AWESOME and AMAZING, and I am so proud of her.
At the same time, I am so insanely sad. My peanut is 5 years old, not 2.5. She is nowhere near walking by herself. She cannot stand up on her own, much less take unassisted steps.
I am so sad tonite. I just want to grab my Peanut and snuggle under the covers and cry my eyes out. And I know that tomorrow all will be fine, and she will smile at me and life will be okay. It just breaks my heart to see the things she is not doing sometimes.
How can a baby born with so many obstacles overcome them, and my Peanut with no obvious obstacles can't climb over them? It's simply not fair.
(Sorry for the ranting and pouting and crying. I promise I'll be back to normal next post!)
Thursday, December 25, 2008
Tuesday, December 23, 2008
First off, they are about 90 miles from here. They refuse to just UPS something overnight, they insist on courriers. They always manage to arrive at 9pm, when Peanut is always asleep, just in time to ring the doorbell and make the dogs go crazy.
I was supposed to get a delivery last week, but I forgot about it. It didn't show up, and I forgot to call and check on it. So when I opened the last bag for Peanut's feeding pump on Sunday, I said "Oh sh*t" and freaked. I called first thing Monday morning (yesterday) to Walgreens. I said that I was OUT of supplies, and needed them ASAP. They assured me that they would deliver them last night, so I wouldn't have a lapse. I did not trust them, so thankfully I washed out that nights feed bag to reuse last night.
This morning I realized that they didn't come last night. I called first thing this morning, and was told "It was raining wasn't it? That delayed the delivery until today". Uhm, no, it wasn't raining .... and I wasn't aware that special needs kids don't NEED supplies in the rain.
She promised the supplies would be here today. So the guy drives up at 7:30 this evening, and my husband goes out to sign for the stuff. Brings it in and I see that it's Neocate Junior, not Neocate Infant. It will make Peanut puke non-stop. I run out to the driveway and catch the guy as he's leaving. Explain the mistake to him. He says "Oh, well how old is she? She's not an infant is she?". Because he is obviously a medical doctor. Or a pharmacist. I don't know, but certainly not just a stupid delivery guy.
I quickly assured him that this formula would mess with her fragile metabolic disorder and send her to the ER in less than 48 hours. He said "Damn. Well, you'll have to call the office in the morning and have them send the right stuff". Thanks for the tip.
I am such a sarcastic bitch sometimes. I told him that I was sure I would be seeing him tomorrow because I have only one can of formula left, so I would be out by Christmas Day. I'm sure he'd rather deliver it on Christmas Eve than Christmas Day? I told him I'd let his boss decide.
LOL Poor kid. I'm sure HE didn't pack the stuff up and decide what formula to grab. But seriously, do I need anymore stress???
Monday, December 22, 2008
Friday, December 19, 2008
Thursday, December 18, 2008
Monday, December 15, 2008
Please pray that my Peanut doesn't get any worse. She has a stuffy nose, and she's sneezing a lot. If she starts retching with feeds, we're in the ER for IV's. Unfortunately with her metabolic disorder, she can't go without food/hydration for more than three hours. So a normal icky cold always lands us in the ER.
Can you imagine? They wouldn't know which of us to treat first! Please pray this doesn't happen.
Thursday, December 4, 2008
We think we have come to a happy solution in regards to Peanut's formula issues. The soy protein we tried was a flop. She spent the nights screaming, retching and throwing up. No fun! I finally found a protein that is soy AND dairy free, at Mother's Market,. It's brown rice protein powder. The only problem is that it doesn't dissolve into her formula, so it won't run through the feeding pump.
She gets a bolus of pedialyte at 7am, 10am, and 1pm. I now add half the daily protein powder to the morning and afternoon boluses. If I shake it up good and pour it right in, it goes through the g-tube. It just doesn't like the feeding pump! So she is getting her protein again, but with no retching or screaming fits. YAY!
I am still waiting for the metabolic and GI dieticians to come up with a blenderized diet option for us. They are still trying to figure it out. It's going to be hard, given that Peanut doesn't tolerate soy or dairy. Also, her metabolic disorder requires her diet to be low low low in fat, and high in protein. I guess it's a bit tricky to figure out what exactly we could blenderize for her, in place of formula.
For now I'm just glad we're not screaming all night, every night. She still wakes up at least once a night, and usually twice. But she goes back to sleep after a little snuggle and her Wiggles DVD on. :)
We have Winter Festival at Monkey's school tomorrow night. I was on the committee for this, so I am anxious for it go well. It's going to be a long and late night though, so good thing we have a nurse for Peanut! The school is right across the street from our house, so she can walk home with Peanut when she's done.
I better get going, I have a million things to do still for Winter Festival. It's almost 10pm and I am exhausted already!
Monday, November 24, 2008
Wednesday, November 19, 2008
My peanut is doing well overall! Tomorrow we are adding a new (soy) protein powder to her feeds, to see how she tolerates it. I am crossing my fingers and hoping for no reaction! She is truly doing the best she has with her feeds right now, not that "the best" is very good. LOL But she's sleeping a bit better at night, and while she is retching and choking and gagging, she's not throwing up. Please pray that adding the protein powder doesn't upset the boat!
In some big news, my Peanut is doing amazing in physical therapy! We are putting her in a reverse walker that has arm prompts and handles. She needs you to stay RIGHT by her, because she will just collapse when she's tired of standing. But when we stand there and blow bubbles and sing and dance and act truly goofy, she stands! And even better, yesterday she took steps ON HER OWN in it! Now those who know my Peanut know this is HUGE. She walks in a gait trainer, but that doesn't need her standing on her own. A reverse walker is a major improvement! It means she is standing, supporting herself with her arms/hands, and WALKING! This is awesome. She is nowhere near consistant or good at it, but she is trying so hard. My goal is for her to be walking in this, by herself and safely, within a year. How amazing would that be?? :) I took some video yesterday, so hopefully tomorrow I'll have time to unload my camera and post it.
In some not so great Peanut news, I have to call her teacher in the morning and raise a bit of hell. Yesterday when I got her off the bus after school, her diaper was so wet that it went through to her shorts. It isn't that big of a deal if it happens once, especially considering that her bus ride is almost an hour due to all the other drop-offs along the way. But then TODAY she came home, leaked through to her pants again! Two days in a row? Obviously they are not checking her diaper right before she leaves school. I wrote a note in her communication book for the teacher, but I am really pissed. She gets diaper rashes SO quickly! And to be blunt, NO ONE wants to sit in peed clothes! She can't tell you she's wet - you need to check her. She deserves that. I know the teacher will be apologetic and do her best to stop it from happening again, but it made me sad that it happened twice in a row. It's hard to send off these precious Peanuts to school, without us. But we trust that they take good care of them while we're not around!
My Monkey is doing awesome. He's so far ahead in school, that he is getting bored. His teacher is great though and continues to challenge him and give him extra work to do when he's done. It makes my heart happy to hear how much the other kids like him. He loves nothing more than to finish his work up, and then sit next to another student and help them with theirs. He's such a good soul! :)
Well, that's about it for now. Thanksgiving is coming up, and we are getting a menu and plans ready. It'll be a big, fun, yummy day!
I hope that you are all doing well in BlogLand!
Monday, November 10, 2008
We stopped her BeneProtein, and her Polycose, leaving her on just Neocate Infant. She was better GI-wise than she had been in ages! She started sleeping so much better through the night, and although she was still retching and gagging, she wasn't actually vomitting. The dietician had me slowly add the Polycose back in, because she needs those calories. She did fine for two weeks, still no vomitting and still sleeping better.
Then the dietician asked me to add back in the Beneprotein, so we could be SURE it was that. It is a whey protein, which is a dairy product. We added it for two nights to her mixture, and we had two hellish nights. She was up screaming and writhing around in her crib. She was retching and gagging and ... throwing up. So I stopped the Beneprotein last night.
At least we KNOW what the problem causer is now! The dietician is now trying to find a protein supplement that is dairy free.
I had this thought this weekend, that perhaps I should research blended diets. Wouldn't it make more sense to get a recipe that would include all the calories, fats, proteins, vitamins, etc .. .that Peanut needs? Then I could blend it up real good and put it through her feeding pump that way.
I am a bit scared to ask the dietician about it, afraid to sound like a wackjob. LOL I think I will ask her when she calls me back. The worst she could say is "No, I don't recommend it".
Do any of you use a blended diet for your tube-fed kids, instead of formula??
Tuesday, November 4, 2008
I screamed at my husband, I cried in the shower. I literally sunk to my knees and prayed. I don't pray. I am not a very religious person at all. I do however believe in prayer and miracles, but I cannot remember the last time I really truly prayed.
I simply prayed for peace in our house. We just need to be "okay", so that my husband and I could stop arguing and everything could be happy again.
Then I got a call from Peanut's school. They just had their huge annual gala. I bought ONE raffle ticket only, because they were $10 each. And with that one ticket - I won the GRAND PRIZE. $5000! FIVE THOUSAND DOLLARS!!
Oh my gosh ... I was literally in tears when I drove over to sign for it. My peanut will get the bed she needs, my monkey will get a good Christmas after all. And we will DEFINATELY be donating a ton of toys and such to Toys for Tots this year. :)
Sunday, November 2, 2008
Monday, October 27, 2008
Tuesday, October 21, 2008
I wish I hadn't. :(
Two years ago, on her third birthday, my Peanut tested severely developmentally delayed and was finally labeled with the horrid "Mental Retardation". She was tested in every field and area, and overall her developmental age was 6-9 months.
Two years later, on her fifth birthday, she averages 8-12 months. In my mind, she is doing SO amazing right now! She is more active, aware, alert, and mobile than ever. I guess though that what seems like huuuuuuge steps to me and our family and everyone who knows her ... really are not that big of a deal.
I know that in the scheme of things it's what WE see that matters. It's how happy and functional she is, not how she scores on paper. It's sad that the school sees her as so low, when in my eyes she is as high as the heavens.
I don't know if I'm even making sense in this post. I hate evaluations.
Thursday, October 16, 2008
Tuesday, October 14, 2008
She *CAN* eat by mouth. She can open her lips, she can chew, and she swallows normally. But she will not do it. She is so orally aversive that we are considered feeding therapy drop-outs. She simply can not be fed by mouth. Reflux is a HORRID thing!
Due to her metabolic disorder, she cannot go more than 3-4 hours without fluids. During the morning and day time she gets Pedialyte every 3 hours. Then she is hooked up to her feeding pump (Zevex Infinity for those in the know) from 3:30pm-7:00am. It is such an inconvenience. The reason she is hooked up for SO long is that she has never tolerated more than 50 cc's an hour. That is sloooooow for pump feeding. To give you an idea of how much it is, 60 cc's is 2 ounces. She tolerates less than 2 ounces an hour, by a slow drip. When she wakes up in the morning, she always chokes and gags and retches until she throws up. Then she always throws up her morning Pedialyte.
The GI had this thought that perhaps it was the Beneprotein that was making her throw up. He said that many patients don't tolerate it. My Peanut has always been a retchy girl, but this is worse than ever before. Her formula is a mixture of Neocate Infant, Beneprotein, and Polycose. So we are doing a trial right now. We are ONLY giving her Neocate Infant. She stopped throwing up! We tried it for 5 days, with NO throwing up. She still retches and gags, but no actual vomit. So I added back in the Beneprotein to see what would happen .. and the next morning, she threw up. I took it back out, no more vomit.
AH HA! An answer perhaps! Even better, is that on just Neocate Infant I have been able to get her feedings up to 65 cc's an hour so far. For every cc that I can increase her, it lowers the time she has to be hooked up. It is much easier in the afternoon when she's awake to NOT have her connected.
So that's where we are. I don't think she can stay on just Neocate Infant forever, because we have to lower the volume of formula per water due to her metabolic disorder. She is not getting the full fat of the formula, so we need to add in supplements. I am waiting to hear from the metabolic dietician to see what to do next. In the meantime, we haven't had puke in almost two weeks!!
Monday, October 13, 2008
We need to get her a new bed. This one - http://www.efurnitureshowroom.com/emily-trundle-day-bed/prod_2998.html?gdftrk=gdfV2405_a_7c480_a_7c1516_a_7c2998 - is PERFECT! I found a cheaper one near us, but the arms of the bed slope downwards and she could climb over them when she's on her knees. This one linked above, THANK YOU TAMARA, would be I*D*E*A*L for my Peanut. (For those of you that really KNOW me and my Peanut, you know why this bed is even MORE perfect! Please don't comment with personal information however)
So now what? What good does that do me? I have a mattress already. I have room in her bedroom. But I don't have that kind of money.
What I do have is an eBay store, that is trying to stay afloat. What I need is a miracle.
It is sad to me that as parents we are not only dealing with the physical and mental and emotional side of dealing with a gorgeous but disabled child, but also drowning financially. :(
Wednesday, October 8, 2008
She can't go in a normal bed, she has no safety reflexes. She'd fall right out. And the bed rails that they make for kids aren't big enough. She would roll the the end of them and fall out. She likes to get up on her knees and kneel (tall kneel, for those who know LOL). She would topple right over the bed rail.
So I thought about my blog-friend Tamara, and her daughter Abby. She is in a gorgeous daybed that is turned around to face the wall, in a sense making a giant crib. But how do you change diapers? I assume I would then need a changing table in the room, but Peanut is too long for those. Her room is fairly small also. And as I priced day beds that would work (meaning, solid wood backs and not slats or bars) .. they are expensive.
So I am looking at SleepSafe Beds. I want a Sleep Safe HiLo for Peanut. Has ANYONE ever gotten one of these approved by their insurance? They offer letters on their website for you to modify to your child, to help get it approved. These beds are AWESOME, and would be perfect!! I am going to start working on it now, but I was looking for some encouragement from anyone that has actually gotten one before.
So let's hear it. How does your special needs child sleep? Is it working for you??
Tuesday, September 30, 2008
Tuesday, September 23, 2008
Thursday, September 18, 2008
We need to have our annual IEP for Peanut soon. Before we do, I told the teacher that I wanted to meet with her and discuss my goals/hopes/etc. for this year. I don't want to go into another IEP and get blindsided by what they think her goals should be. For some reason they are insistant on trying to get her to eat orally. We are not that concerned about it! We are on a break from feeding therapy, as all it was accomplishing was frustration. So for the school to have an oral eating goal is silly.
Tomorrow I meet with her teacher for an hour. She is new this year and seems very open to discussion. She is helping me get Peanut mainstreamed, which seemed impossible last year. I hope that she'll listen to me about my hopes for Peanut. I want her to be shown more switches and picture boards (PECS) and such. They seem to fight me on things that might actually cost them a dollar or two.
It is so frustrating to be the only person seemingly fighting for what my child deserves! She is such an amazing and incredible being, and she deserves the world.
Saturday, September 13, 2008
Editted to add: I ended up taking her to the Urgent Care. Her ear was hugely swollen, and there was a red streak heading from it down her neck. The dr diagnosed cellulitis, and started her on Keflex. I am to take her to our regular pediatrician on Tuesday, and to the ER if I notice it looking worse before then. Poor peanut! All this, from a mosquito bite!
Then we spent the day cuddling on the couch. Of course, that means Mommy is now sick too! There's no rest for a tired mommy. :(
This morning I decided to give her all her meds first, and then wait 30 minutes before giving her morning pedialyte. She immediately spit up the meds. I re-dosed her cold medicine, hoping to knock off the phlem at least. She has managed to keep that down, so I am going to attempt pedialyte.
As a Mom, I don't think I ever realized how many things I would do that are SO gross, yet have become second nature. Peanut is a big time retcher. She always retches and gags, and sounds like she's going to puke. I know the sound of stuff actually coming up, verses just sad retching. This morning I didn't have a towel nearby so while yelling for Monkey to bring me one, I cupped my hands and caught it all. ICKY!!!
It's going to be a long sick weekend. I need to run to WalMart and stock up on cold meds, and then do the regular diaper/soap/etc shopping. What I really WANT to do is take a long nap!!
Please keep Peanut in your thoughts. If she continues to spit up her pedialyte today, we'll end up back at the ER. :(
Wednesday, September 10, 2008
It SUCKS. Peanut has been in school for one week exactly, and she came home snotty today. I hate that parents send in sick kids! I can understand a slight cold, but the other day one girl in her class was green snotted and icky. Keep the poor thing home, and hopefully everyone else won't get sick too!
I foresee even less sleep than normal tonite. I am tired already, I'm sure tomorrow will be loooooong. Good thing it's almost the weekend! If I have to clean up any more spit up, I might just lose my mind.
Wednesday, September 3, 2008
Peanut is in the same classroom she's been in for two years, since she turned 3. The class she's in goes from age 3 through the end of 8th grade. It's the only severely handicapped class in the district that goes through junior high. There are about 8 kids, and 6 adults (Teacher and aides). I wasn't happy about her going back to this classroom, as prior to now it wasn't kid friendly. Peanut is the highest functioning kid in her class. Most of the other kids are not able to crawl or play with toys or interact in any way. The classroom was dedicated to that type of child, and Peanut had outgrown it. I wanted her transferred to the same school Monkey goes to, and put in a regular special ed class. I also wanted her mainstreamed for a portion of the day.
Turns out that they have a new teacher in her class this year. She's incredible! The classroom is TOTALLY kid friendly, desks at wheelchair height, etc. Centers are set up, it just looks great. I know the teacher from the past, and I am thrilled with her being the teacher. So for now we are going to stay there. Also, I talked to the Director of Special Ed, and Peanut will be mainstreamed for half of the day every day, starting in October!!!
I am so relieved that everything fell into place. I was really geared up for a big fight against the school district, and have even already contacted an advocate! Now I won't need all that, thank goodness.
Monday, September 1, 2008
Peanut and Monkey go back to school on Wednesday. It has been a fun summer, but I am glad to get back into our normal routine. I think Peanut has grown bored of me anyway, as she is getting fussier earlier in the day now than normal.
Peanut is going to be a KINDERGARTNER!! Can you believe it? She is going to the same Severely Handicapped class she's been in since she turned 3. I am working on having her transferred though, and the school district is really fighting me. I want her in a regular Special Ed. class, where she's not the highest functioning kid. Right now she's just about the only kid in her class aware of her surroundings, much less interactive. I want her around other active, functioning kids! I also want her integrated for a bit (maybe an hour a day?) in a general ed kindergarten class. The school district is pitching a fit. I know that she is not going to learn her ABC's or how to write her name, at least not now. But she IS capable of socializing and sitting with other kids her age. I think she needs that. I think she DESERVES that! So, the school district battle is waging.
I am still trying to figure out how to get my blog all set up how I want it. I will try and post pictures later today if I get a chance.
Thanks for checking in with us, I know our blog is new and kind of dull still. :)
Tuesday, August 26, 2008
Peanut is tube-fed 100%. She can eat, functionally she is able to chew and swallow. But she won't. She refuses. She will spit food out, turn her head, refuse to open her mouth. If you manage to get in a bite that she didn't want, she will gag on it until she chokes it up. Fun! She has been going to feeding therapy at the children's hospital, but it's not making any progress so we are taking a 6 month hiatus.
Enter mommy guilt. "What if I keep taking her, and she suddenly starts eating next month?" Arg. I had someone ask me about hyperbaric oxygen treatment today. No, we have not tried it for Peanut. It is EXPENSIVE. Insurance does not cover it. And I cannot find enough supporting evidence that it works for kids with Cerebral Palsy.
Which brings us to Peanut's latest diagnosis. For lack of anything else, she is officially diagnosed with Spastic Diplegia Cerebral Palsy of Unknown Etiology. Funny that it's spastic, because MOST of her is hypotonic (low tone). As in, the opposite of spastic. Her ankles, however, are high tone. It's important that we find high tone somewhere because that is a qualifying diagnosis for her therapy and insurance purposes. It's complicated and makes no sense, but she luckily has the high tone in her ankles so it works. Overall, she is so loose and floppy. She can sit up, and crawl. She can walk like a mad woman in her gait trainer. But she cannot stand unsupported. She has AFO's (ankle braces), and is getting knee braces (to prevent hyperextension). She is SO loose, her hips and knees pop in and out of socket. She actually likes that feeling, and does it on purpose. Ick, I know! Between her popping her knee in and out (click click click) she grinds her teeth. Constantly. It's called bruxism technically, and it is SO annoying! She gets a lot of sensory input from it, evidently.
The kids go back to school a week from tomorrow. Peanut is starting kindergarten! She has been in school since she turns three, but it's big that she's a KINDERGARTENER! :) Monkey is going into third grade. It makes me feel old to have a kid that old.
I better go get dinner made. Daddy will be home soon. Peanut has a nurse here today, so I went and got my nails done and did the last back to school shopping. I better go do SOMETHING to prove I didn't laze around all day. :)