Jacob got his 1st Wheel Chair today.

Today was the big wheel chair day. We got the call yesterday afternoon that it was in and ready to be delivered today. I was excited and scared for it to come in. It was the dawn of a new era in special needs. THE BIG FAT WHEEL CHAIR!!!!

So, he shows up at 1:15 today. With this huge mammoth chair for my tiny 27lbs 2 year old. He also came with his new bath seat with the extended base that makes it higher off the ground. The chair's frame is suppose to fit him for 5 years.

Jacob seems to be comfortable in the chair. He sat in it for a few hours with no crying, just to test it out. The handles are very high, like nipple line (with the bra on lol)  height for me and I am 5' 7". To comfortably push the chair you have to tilt him back a little to get the handles to more stroller height. Then there are the little wheels on the back that stop it from tipping over. When you push it you kick the wheels. This dang chair is $6,688! Dang they should have thought about the comfort of those pushing their children in them as well. Grr!

I had knots in my stomach as I placed my son into the chair for the 1st time. I know nothing has changed about him before the chair arrived and after, but it was just the thought of knowing the much anticipated chair was going to yell to the world that my son is special needs. I wonder what kind of looks he will get. Will he look like a monster to other people? One not worthy of getting to know? A spectacle for people to look at and wonder what the hell is wrong with him? So many emotions I did not not think would bother me. I must admit he does not look like a monster in it. He looks pretty darn cute, but the 1st thing he did when he was in it was cross his eyes and start drooling. Then I imagined him being 20 cross eyed with a bib on sitting in even a bigger monster wheel chair.

Mainly it just disturbed me how big and heavy it was. I have a Baby Jogger City Mini double stroller that takes up most of my trunk. I LOVE MY STROLLER! Initially looking at the wheel chair I was thinking it may fit back there with it, then I tried. Not only does the beast take up the entire trunk, the handles are so tall you have to tilt it back and recline the chair to get it in there and it hardly fits. I had to move the stroller to the driver side van door. I can shove it in between the seat and the door.

Jack looked into wheel chair lifts the kind that attach to the back of the van and they were going to be nearly $3000 with a wheel chair accessible van running around $26,000 USED!

Oh well, I guess overall not much has changed. I plan to keep the wheel chair in the van for when it is needed and continue to use the double stroller when I am alone. I was looking into getting a single stroller for Andrew and put Jacob in the wheel chair when I am out with a 2nd adult.

Jacob in his Quickie Zippie wheel chair

Botox

Okay WTH? First off I would like to present this weeks search keywords that come up under my stats for when people come across my blog on google.

Google Search Keywords that brought people to my blog:

1. g tube   2. mother of a toddler and triplets   3. sonogram 2 identical 1 fraternal triplets   4. peg tube in children   5. ultrasound of triplets   6. 11 weeks pregnant twins ultrasound   7. g tube six year old   8. hip abduction pillow   9. iud stuck   10. little girl watching mom change her brother's diaper  <----- WTF! Seriously why would anyone search for that and what the hell is in my blog coming up for someone to click on my blog for this search?!?!?   Okay not that it is something weird or dirty, just don't understand why someone would be a googling that.       Jacob had had Botox injects in the sides and back of his legs yesterday. Actually seems like his legs are slightly tighter today, but hopefully with lots of stretching over the next few months we can get some good range back in his legs and hips.   He has had a croupy cough since Friday. I actually missed work because I was very worried about him. He seen his speech therapist for the last time today until he gets medicaid again. He is over his max limit for our private insurance :-(

Jacob's Charleywrap

When I 1st bought Jacob's Charleywrap, I was worried it was not going to be worth the small fortune we spent on it. After great customer service and a few adjustments from the maker over the last couple months we have been able to take advantage of the Charleywrap. I can put Jacob in a jumparoo and he can kick around without assuming his arched back position he tends to hold. It also comforts him when he he is crying. He cries less when he wears it. Unfortunately it is very hot here, so I don't keep it on him all the time. The main purpose I wanted one of these in the 1st place was for him to use in restaurants. I still need to rig up a little something to stop him from throwing himself backward, but over all it does just what I wanted it to do.

This is where I got Jacob's Charleywrap http://www.charleywrap.com/index.html

I was so thrilled seeing him sit in the high chair at the restaurant. I've ordered this awhile ago, but this is the 1st time I got to use it for the reason I wanted to.

Seeing Jacob sit up in a "normal" high chair is worth all 50,000 pennies I paid for it :-)

Ha ha he fell asleep. It made for a very peaceful lunch :-)

Had a busy day. Worked for 4 hours. Took Ava to school. Went to lunch. Came home and packed. Picked Ava up from school. Took all 3 kids to Disney World with my husband. Came home and put kids to bed. Ahh relax time now.

2 year old check ups, Physical Medicine, and Botox

I've had Jacob on my homemade formula for about 2 months now. I was just sitting here calculating how much it cost to make his food. I was thinking dang I spend a crap load of money to feed him! It is $229.38 for 30 days according to my grocery receipts, so that is only $7.64 a day. I guess that is not so horribly bad. Heck it can cost me $20 alone to feed the people who eat by mouth in my family for 1 day. He is doing well on the formula. He just vomited, but it was the 1st time he vomited in a few days. When he is on commercial formula he vomits almost every day if not more than once a day. He is definitely gaining weight on it as well. I'm actually going to cut back on the amount of oil because he may be gaining to much weight. He has gained more than 2 pounds in the past 2 months. He weights more than Andrew and he is taller. I changed what I feed him a little bit now he gets 3 jars of meats, 5 jars of fruit and veggies (usually 2 of each and 1 that has a fruit and a veggie in it) 6 tablespoons of rice cereal, cutting back to 1 tablespoon of canola oil instead of 3, I have also cut back from 2 cups of Kefier(milk/yogurt with probiotics) to 1 1/2 cups since I was having a hard time getting him to consume the entire amount in 1 day. He gets 1 drop of Poly-v-sol drops and 2 tablespoons of Bragg's apple cider vinegar (apparently helps with reflux)

On to the boys 2 year old check up:
Andrew: 25.4lbs 12%, 35 inches 58%, and 47cm head 10%
Jacob: 27.5lbs 39% (well, at least he has something on Andrew :-))35 inches tall 58% 47cn head 0%

Andrew is caught up! He is doing everything a normal 2 year old should be.

Jacob had his post op ENT visit today. All is well. He is allowed to start his feeding therapy again and start attempting to eat by mouth.

Jacob also seen the physical medicine doctor today. We had a lot of concerns with his hips and legs. His legs are scissoring more and his right leg appears to be about a 1/2 inches shorter than his left leg. He was examined and they measured his legs. Sure enough it is 1/2 shorter. His right leg in particular is the one contracting and scissoring over his left. He is at his max doses on his baclifen, so our only other option she gave us was Botox. He goes to have Botox injection in the back and side muscles of his leg and in his biceps on Monday.

Jacob also got a new loaner gait trainer today. It is a bigger size and he fits it better. It has these nice arm rest that his arms strap to making him stay up straighter. I love it!

Still waiting for his equipment to come in we ordered months ago including his wheel chair. Still no word on his medicaid status. :-( As of now we are paying everything out of pocket for co-pays etc. We actually had to cancel 1 of his doctor appointments this week due to the costs. He had 4 appointments this week. 3 specialist $35 each and their primary $15 each and both boys were seen. His medications I had filled this week cost $93...one I had divided up because I have to pick it up every 10 days so instead of $65 it is $22 every 10 days ($2 discount for getting it all at 1 time) His inhaler needs to be filled. That is another $45 so it is go to have to wait until next pay day. Ugh!!! Sucks that I am being punished for trying not to rely on the government for my son's medical needs. Because I have private insurance on him and his medicaid is gone there is no other government program that will pick up as a 2nd insurance expect medicaid. If I would not have had private insurance I could have signed him up for Medikids, but then he would have went without insurance period before I could apply. This whole situation suck, and their really should be better programs for children like him :-(

Ava has been in a Pre-K 4 program for 3 days now. She is really enjoying it. She has not complained once that she does not want to go. She leaves and comes home happy. I'm sure it helps that Bryanna is with her so she is not alone.

Ava playing at the Genetic Doctor office that we were at for 3 hours last week!

Andrew cheesing for me way after his bed time a few weeks ago.

Daddy and Jacob today at the Physcial Medicine appointment

Jacob and Andrew at the Genetic MD appt last week.

My daughter is a thief!

How many different ways can I explain to my daughter she can NOT take things she wants (she very spoiled :-/) and when she takes things it affects the people she takes them from.

Tonight I picked my daughter up from my ex-brother-in-law's house. I watched my nephews last night and I convinced him to take Ava with him when he picked his kids up :-) Well, when I got there tonight, I told Ava to collect her toys she brought over in her Hello Kitty bag. She runs around his living room and puts stuff in the bag. We get in the car and leave. My brother-in-law lives like 5 minutes from my house. About 2 minutes down the road she proclaims, "Mommy, don't look in my hello kitty bag." I ask "Why not?" She says, "because I don't want you to see what is in my bag." I ask, Why did you take something you were not suppose to take?" She goes on to tell me about how she has real chipmunks in her bag and that if I open it they will get out and will have to catch it...among other excuses she fabricated. At this point I had an idea of what she had taken. My brother-in-law is a McDonald's manager and often brings home the toys displays when the store no longer needs them. He brings them for his sons' to have.

We get home and sure enough she had taken all the girl chipmunks from my nephew while he was sleeping. She went on to explain how they were girl chipmunks and that she is a girl and that boys don't need girl chipmunks. I explained to her that stealing was wrong and she had already asked for them and my nephew told her no. I tried to explain how my nephew would feel when he realized they were missing. I asked her how she would feel if he took all her barbie dolls. She screams, "I WOULD BE SO MAD AT HIM." No matter what I said she insisted that she should get to keep them. She is so rotten. I made her call my brother-in-law and tell him that she told from his house. She acted all shameful like she was sorry, but it did not stop from thinking she could keep them anyway. I took them from her and will make her return them when we go to my sister's house next weekend. Ugh! I even told her she could go to jail is she takes things that are not hers. Apparently she thinks I am rick. She says in the sassiest voice she has, "Well then you can just buy everything for me."

She is spoiled, but I DO NOT let her have everything she want. She asks for things in the store and I tell her we don't have the money for whatever it may be that day. She usually puts it down and moves on. This bring back the memory of the 1st time I caught her taking something from a store that was no hers. It was the 1st time I ever seen her use thought process in taking something and purposely hiding it from me.

Every time we go to Lane Bryant and I am checking out they have all the costume jewelry up by the register. She is always fascinated by the over sized rings. She puts them on her fingers and always asks me to buy them. I tell her they are to expensive and make her put them back. They are $15-20. I have caught her trying to put them in her pockets etc. and tell her you can not put things in her pocket mommy has not paid for. I check out that day and go home. Jack does a load of laundry including the stuff she wore that day. While transferring laundry from the washer to the dryer we found "IT" She had taken one of the rings from the store that day and walked out with it in her pocket. We confronted her and she admits to taking it. I even made her go back to the store and tell the lady what she did last time she was in the store. I never remember to take the dang ring back with us when we go to the mall....she WILL be the one to return it. It just sits in my house with the tag on it. I'm sure I will have to pay for it because it has been washed and the tag is only half readable on the back. It has been in my house over a month now.

So some kids go through biting stages, calling names, hitting, coloring on walls, etc...I never thought I would have to deal with my child stealing! Last week her and her friend tried DID walk out of Burlington Coat Factory with bracelets on, but they announced it and I made them put them back. They were playing dress up, and I don't think that time she realized it was stealing, but when she is purposely hiding things to get them home!

Any ideas? I have made her stand in the corner. I made her confess. She will be returning the ring and the chipmunks. Is this normal? She certainly know she is wrong and is always telling on herself. She always tells me not to go in the room or look in this bag etc when there is something she does not want me to see....

The LOOT!

3 stolen ladies

1 Stolen over sized flower ring

Finding A Diagnosis for Joseph

An online friend of mine that I have been in contact for quite awhile now needs a little help. Anyone that has special needs children out there knows how important it is to find out why your child is the way they are. In her case she has no physical explanation to why her son has special needs. She has 3 surviving quadruplets. 2 of her children have high functioning autism. They recently had MRIs done and her daughter has PVL, but to her surprise her son who has the lowest level of function of her 3 has a perfectly normal brain. She is trying to take her son to a specialist that deals with children with low tone etc. She can tell her story much better than I can. I just wanted to share the link to her blog and donation site. If anyone can even give a $1 to help the find a diagnoses for her son that may improve his quality of life, please do. Thank You

To donate: http://www.gofundme.com/6yhzo

The link to my friends blog: http://mommax6.blogspot.com/

We are Home

Finally made it home with Jacob just after 3 today (8/2). Wow today has royally sucked! Jacob has screamed a good part of the day. He vomited before we left today. He vomited twice last night. I am so discouraged right now. I am glad he is home, but he is 5 days post surgery. He seems just as miserable as day one. He has super thick slimy mucus coming from his mouth causing him to gag and chock all the time. I attempted to feed him when I got home. I bolus fed him just a few ounces. I even added Thick It to it thinking maybe it would stay down better. I think he got maybe 3oz over about 30 minutes. He was screaming in his crib...then he vomited. Jack took him and gave him a shower since he has not had a good bath in 6 days. Man he SMELLS! Mostly his dragon breath from the surgery though. No sooner did he get out of the shower, he started all over again. Just as we thought we had him settled down he started screaming again. I tried feeding him a 1/2 oz. Since he had not held food all day. I was actually on the phone with the pediatricians office during this event. (they called to check on him) He starts gagging on his thick mucous. I pick him up and he decided to vomit everything I just fed him and what was left behind from the previous 3oz. It even had lumps from the thickener I gave him. UGH! I had puke all over me, down the hall, and on the wall. The diaper gene was over flowing with diapers that had not been taken out by anyone in a week. I was trying to clean him, clean myself etc...so Jack takes over cleaning Jacob, but then asked me to take out the diapers etc. For some reason this seriously pissed me off.


***Today is 8/4/11***
Well, I guess I was in the middle of a rant when I had to stop blogging on Tuesday. I'm in a much better mood today. Jacob is still requiring pain medication almost every 4-6 hours. He coughs and gags and then screams like you are stabbing him. Poor Child. He also is healing from cold sores. Yes I apparently gave my baby some herpes simplex at some point in the last 2 years. He has NEVER had one before, but I have got them since I was in at least elementary school, My sister and mom get them too .Eww. Ava gets them as well. So, I guess the stress from the surgery and respiratory issues brought them out. He has a big one on the right cheek and on the right lip. They treated him from them in the hospital and they started getting better, but now since they are all dry they have started to scab and bleed. TMI, yeah I thought so to. I also started giving him robinal since we have been home. This has helped with his secretions. We went out to dinner last night and he made it through the entire outing with minimal crying. I even tried to feed him some ice cream which responded with sad face poking out lip face.

Today me vs. 4 kids spent 4 hours at the mall. We all at lunch for $7. I totally love this Chinese place in the food court $7 gives you enough to feed 2 adults or 1 fat person and 3 kids. LOL and I still brought some home. :-) I am preparing to get everything ready for Ava to start back to pre-k 4 this year. I got her hair cut. I had Christine's kid Brianna with me. So, all the kids minus Jacob spent some time playing at the play area in the mall. We spent a lot of time shoe shopping. Ended up getting a good deal on shoes for 3 kids. Bought Jacob some shoes from pay less to go over his AFOs they were B1G1 1/2 off so Brianna found a pair of light up shoes for $5.50 walked out with 2 pairs of shoes for less than $20. Brianna totally forced me to buy her shoes. How could I tell her no...hahaha she put them on and tore the tags off. LOLThey did not have shoes that I liked for Ava and she has been begging me for those ugly Sketchers Twinkle Toe shoes that run like $50! I have never bought her a pair of NEW name brand shoes. All her shoes in the past were bought off ebay or other places usually used...unless they were walmart of target shoes. Last year I bought her a pair of like new pink and white Nike shoes for $6.50 off ebay. I did check ebay for the twinkle toe shoes last night and the cheapest like new or new ones I found was around $25. So, today we went in to the shoe store just to look at these things to see how they fit her and if she even still wanted them. She found a pair that had Velcro closures which was part of my requirements...she put them on and would not take them off. LOL They were on sale for $35 so I ended up buying the dang things. I never seen her more tickled over something in my life. She almost fell running though the mall trying to watch the shoes light up. This is her 1st pair of light up shoes.

OH HECK NO! She is sitting on the couch next to me and I just asked her where her new school shoes were while I was thinking about them. She had them sitting next to her. LOL So I asked her if she still loved her new shoes..and she just replied, "No they are stupid!" OMG I say why? She says "They have to many (3) Velcro straps." Then says that they are okay though. SPOILED ROTTEN BRAT! LOL




Ava's "Stupid" new shoes. I think they are ugly...when I was buying them she thought they were the best thing ever LOL

Can't belive my baby has 2 weeks and 3 days before she starts pre-k 4.

Monday PICU UPDATE

He was off oxygen yesterday and then last night he decided to drop again and they had to put him on 1 liter. They didn't bother trying to ween his oxygen last night. The day shift nurse took it back off him this morning. He has done fine without the oxygen, but he just has a lot of mucous like he has a cold. I asked if we could just come home with back up oxygen and a pulse ox. Our issue we have our kids with us now. We just learned that kids under 3 can not be in the PICU. So, Jennifer had to get loud, but respectful...lol. They told use we can keep the kids with us in the room with the door closed. Jacob really does not need to be in the ICU either so they are going to "expedite" lol  transfer us to the floor where our children. Are "allowed" to be. If he stays off oxygen he goes home tomorrow. I am try.g to get them to consult with his pulmonologist to get him an at home pulse ox so I know when he is dropping due to his user airway obstruction issues.

Brandi Fuller had her baby Sophia by c-section last night at 9:57pm. She was 2lbs 9oz and breathing on her own when they took her to the nicu. Brandi is recovery well. I hope to get over to see he and baby at some point today.

Today is my husband's 29th Birthday. Hoping we can at least get him some yummy take out for his birthday.