Monday, December 26, 2011
I made her wait to open presents until after breakfast. She was not happy about this. One of the only times I have seen her deny food. Telling me she did not want breakfast. We had scrambled eggs with cheese, biscuits, gravy, and bacon for breakfast.
Once the present opening began Ava was all into it. Andrew on the other hand really had no interest in opening presents. He got into his stocking 1st. He was perfectly content with the coloring book and crayons her 1st pulled out. Then he found the bubble wand. The icing on the cake was a cheap little magnadoodle. As much as I tried to pull his attention from the"cheap gifts" he did not care. LOL Jacob was also not a happy boy. He gave us sad face and cried most of the time. Jack helped him open his gifts while I opened Andrews,
I was not feeling well yesterday so we all went back to bed around 10am. We slept until around 1230. Jack got a hot dog cooker for Christmas. I went to the closest place open to get hot dogs and buns for him to play with his new toy (Walgreens...spent almost $6 on a pack of hot dogs). Ava came along for the ride and when we got home Jack's parents were there. We spent time with his parents and opened more gifts. Jack's parents left after a few hours and we took another nap :-) Did I mention I have been sick and I feel like crap :-)
We woke up from 2nd nap time around 6:30. I made dinner. Ham, mashed potatoes and gravy, green beans, corn, and rolls. No one really ate it except Jack. We made a trip to the south end of town to Jack's parents to return Jack's dad's glasses he forgot. From there we went to Logan's grave. Last year we went on Christmas Eve...I think. Jack, Ava, and myself lite candles and sang Christmas Carols. (this is Jack's idea and his way of including our son in our Christmas <3)
Jack got me the most beautiful, thoughtful gift I think that he has every taken the time to buy for me. He got me a glass photo frame with a spot for a picture on the left and on the right it has Logan's name and his birth and death dates followed by a poem about Heaven.
This is what it says:
I am home in heaven, dear ones.
Oh, so happy and so bright!
There is a perfect joy and beauty
in the everlasting light.
All the pain and grief is over,
every restless tossing passed;
I am now at peace forever,
safely home in heaven at last.
There is work still waiting for you,
so you must not idly stand,
do it now, while life remaineth . . .
You shall rest in God's own land.
When that work is all completed,
he will gently call you Home;
Oh, the rapture of that meeting
Oh, the joy to see you come!It brought tears to my eyes. I was so surprised. I never imagined he would get me such a beautiful gift.
This is the picture I put in my beautiful picture frame.
The day after Christmas has been a pretty nice day. My house is trashed...EVERY. SINGLE. ROOM. There is boxes and toys EVERYWHERE. At some point I am going to have to clean this place before Jacob's therapist shows up tomorrow. We did a little shopping for the 50% off stuff this morning. We had lunch at Sonny's then Jack and the kids took a nap while I loaded up some old toys and donated them to a friend. I can't wait for bedtime!
HOPE EVERYONE HAS A BLESSED NEW YEAR!
Saturday, December 24, 2011
I have been okay all month long with no big emotional break downs. I placed Logan's empty stocking under the tree and I lost it. I looked around and found a stuffed snow man to fill the empty void inside the stocking. The tears started rolling and I couldn't stop them.
Last year I placed his 1st Christmas picture (which I believe has fallen behind my dresser) and the bear that he received from the NICU with the Santa hat on in his stocking. Last year it brought comfort that I had these items that laid in his crib with him on Christmas morning with me for the 1st Christmas he was missing.
This year I am just not prepared. His foot print ornament it still lost somewhere in his memory box. His picture is hiding behind the dresser and his Santa bear is MIA. I honestly don't even have the strength to look for it. Jack asked me to go through his box and organize it the other day and I just can't right now.
On a happy note. Ava is SOOOO excited about Santa's arrival. She 1st asked me if she could sleep in the couch so she could give him a hug when he came. I explained to her that he had so many children to see that he comes so fast you hardly see him and that is why you visit him before Christmas to tell him what you want. She then asked that when she heard him say "Ho Ho Ho" could she just sneak out and take a peek at him.
Glad to say she is fast asleep and unfortunately she missed Santa's arrival. He did leave her a thank you letter for the milk and cookies and food for the reindeer. I can't wait to her reaction when she wakes up tomorrow. This is so much fun!
|2011 Tree and presents|
|Ava;s doll crib from Santa|
|The letter Santa left the kids thanking them for the milk, cookies, and reindeer food.|
Tuesday, December 20, 2011
Had to deal with some household issues that delayed out departure by about 2 hours. We had plans to go to Celebration Florida for the bubble snow and picture with Santa like we do every year. From there we had plans to go to Down Town Disney to buy our yearly Christmas ornament from the Christmas store.
We finally make it to Celebration. Jacon is in his wheel chair for the picture. Jack has Andrew in the stroller. Ava, and my 2 nephews Michael and Gavin were walking. We make it to the Santa area, deciding to take pictures before the kids Christmas cloths turn into a wet bubble mess. All goes well. They take several photos. 1 with all the kids looking and Jack looking, but of couses I was not because I was looking to see if Jacob was looking. LOL it was the best picture, so it did end up on the Christmas cards. We leave Santa and walk out to the side walk. The other 4 kids are running around like animals. I asked Jack to place Andrew in the stroller and strap him in before he ran out in the road. Then I asked him to keep and eye on the kids because I was turning around to get the picture. When I asked he was standing in front of Jacob's wheel chair. I guess he did not hear me. Jacob was on a flat side walk. I was telling myself to put his break on, but then I was like he is fine. He can't go anywhere. Not like we were going down a hill. My back was turned, Jack's back was turned putting Andrew in the stroller. The other 3 kids are running around chasing each other. I hear a crash. I look behind me Jacob's wheel chair was not there. I guess one of the kids bumped his chair or there was just enough of an decline of the side walk that his chair started to move. At the end of the side walk was a curb before the street. There was a drainage area under the sidewalk. Jacob's wheel chair moved forward and the front wheels went under the lip of the drainage drop and his chair went forward. He went face 1st into the road. As soon as I heard it. I turned them screamed and ran toward him when I realized the horrifying thing i seen in front of me. My son face down in the road with his wheel chair on top of them. Jack and I picked him up and I checked him out. Mrs. Claus had jumped up from her chair for the photos and ran to check on us along with several other people. Mrs. Claus called 911. Jacob had a big scrape on his forhead and his nose looks a little a little swollen. The ambulence came and checked him out. Even though he was acting normal besides him crying and the scrapes we decided to have him looked out because he did go face 1st into the ground with the force of the heavy ass wheel chair behind him. He went to the hospital in Celebration and they did a cat scan. Luckily everything came back normal!
LESSON LEARNED! IF MY HANDS ARE OFF THE WHEEL CHAIR THE BREAK WILL BE ON. I felt like the worse mom in the world. My helpless Child could not even tell me or stop the chair on his own. I was so embarrassed for all those people to witness the horrifice thing that happened due to my neglect to put the break on the wheel chair. I am so greatful he is okay. He is fine today. His scrapes look better today and he is not crying like he is in any pain.
Tuesday, December 13, 2011
Not many people talk to me about him. I'm sure it is because they don't want to make me cry etc... Normally talking about Logan does not make me cry. I enjoy talking about all my children. Ava just caught me off guard because I didn't expect her to think about him next to God. We explain to her that Logan died because he was sick and could not breath and that he lives in Heaven with God...but when we visit his grave she still calls the cemetery "God" and she understands he is buried in the ground by his head stone.
I guess I was just extra emotional because I decorated the Christmas tree yesterday. I put up the babies 1st Christmas ornament. They all hang on the same branch because it was the only Christmas they were all alive. I also hung their ornaments I bought last year. I found the perfect ones. 1 is a baby with wings that I wrote his name on and a message on the back about his 1st Christmas in Heaven. The other 2 are babies with wreaths with 2010 on them. I wrote Andrew and Jacob's names on those.
November-January puts Logan on my mind more than normal. I think every few days "What was going on with him 2 years ago on this day?" I have this blog as a reference to when he was sick or well. I constantly think "Was this the week in November when he almost died? Was this week he was on nitric oxide?" I would go on to remember him being very swollen and I remember praying at his bedside begging God to heal his lungs. Then after several days my miracle happened .He started getting better. His oxygen needs went lower and lower. I remember him becoming well enough to go to surgery to have the trach placed. December 2009 was a month full of anticipation of him coming home. I remember him being weened off the vent. I remember the heart breaking disappointment when he went on isolation late December for another hospital acquired infection(RSV again I think). I remember him being on isolation for what seemed like the millionth time on Christmas day. I remember not being able to take the kids to see him. He was having a hard time breathing on Christmas..I believe they even had to bag him. Then end of December brought better news and lower oxygen settings. I remember him being nearly on room air. The beginning of January he had a g-tube placed and a hernia repair. He never totally rebound after surgery. I remember him slowly requiring more and more oxygen and the staff assuring me he was still on track to go home by early February. Then the smack in the face happened January 27th. He went bad...really bad. He got worse every day until the day I decided to let him go. January 30, 2010. I nearly regret that decision every day. At first I didn't regret it. Now I constantly wonder if God still had that last miracle waiting for him. You know how you read these stories about babies that had been pronounced dead and suddenly come back 20-30 minutes later. Maybe I lost hope and faith to fast? Maybe I should have held out until he was officially pronounced brain dead? I feel I was selfishly think that he would be permanently brain damaged after the unreadable co2 levels etc. I remember thinking about how I did not want him to live a life on a vent with catastrophic brain injuries. I remember thinking about how I did not want 2 brain damaged children....so maybe part of me having the vent turned off was selfish? What if today he was that walking miracle child that defied all medical science? They exist but I gave up.....I was not strong enough to fight anymore so I convinced myself that my decision was best. I do think of all the pain and suffering he endured during his short life but it will never stop me from wanting him every day.
My heart still swells with joy when I see the children and adults who have beaten the odds and over come something life threatening .I do believe that God had a hand in their survival. In the back on my mind though I am angry that I can not give the testimonial of my brave little boy beating the odds. Then my thoughts turn to Jacob and how I used to live in denial that he was not going to be profoundly disabled. As days, weeks, and months pass I feel like the hope of that miracle is slipping away as well. He will do something so simple as suck on a pacifier by himself for 30 seconds and bring me joy...then he just stops.
Jacob had his 6 month review for early steps with his physical therapist and his early interventionist. He is still around a 3-4 month old developmental level. Andrew was nearly caught up but some thing he was behind at an 18-20 month old level.
I ask my friends for prayers for the new year. Pray for me and my family the prayers I have a hard time doing myself. I defiantly need someone to lift me up in prayer to pull me out of this funk. Hoping 2012 bring great things to my family. We have something really big happening mid 2012 :-)
|2010 ornaments...must buy all the kids for this year still :-)|
|Logan's grave getting festive. We never quit finished it. Last year it was decked out with garland and Christmas statues.|
Saturday, December 3, 2011
Jacob has been really sick this past week and we have had lots of vomiting. I have held off on his blended diet for a few days and I am actually trying out the new formula Compleat Pediatric that came in the mail while we were gone. It is apparently made of "real food" and is the commercial brand of a "blenderized diet". So far he has vomited 2x since Thursday morning when I started giving it to him :-( I enjoy making his food and will probably stick with it. One day I hope to buy one of those really nice blenders so I can use more fresh fruits and veggies and get away from using baby food to make his food.
Andrew has been a complete monster lately. I think his terrible 2s has went into full force. He has to levels Loud and LOUDER. The kid screams everything. He had me so frazzled tonight that while I was packing them up early to take to my sister's for the weekend that I forgot important items for Jacob and had to make a 2nd trip to meet her 1/2 way to give my sister the rest of his supplies. He has to be forced to eat anything that is not bread related, he craves attention none stop (I feel bad) anytime I am sitting he is sitting on me, if I am walking he is following me around standing in my way. If I am in the shower he is beating on the door, it I am on the toilet he is unrolling the toilet paper...etc...Wow I can only imagine this if all 3 of my triplets were alive and healthy like he is. I am thankful he has the ability to annoy the crap out of me though :-)
Ava is starting to have quite the weight issue. I am really concerned about how much weight she is gaining..again. She is about 12 pounds over weight. I feel bad denying her food that other kids are having, but she is 4 years old about to go into a kid's size 7! I have seen other kids make fun of her over he weight already and it breaks my heart seeing her follow down the same path I did when I was her age. I am trying to teach her right and wrong and what foods are better for her and how she needs to make healthy choices, but at the same time it is okay to have "the bad foods" sparingly and in moderation. Like tonight she was trying to eat a cup cake at bedtime at my sister house. I explained to her that she should not go to bed eating sweets, bad for her teeth, weight etc...she still really wanted it. I offered to cut it in 1/2 or 4ths and said she could eat the rest tomorrow. Finally after taking 1 bite and licking some frosting she told me she was going to save it for tomorrow and that she really only wanted the ring on top. Makes me proud to see her make that decision, but sad that she had to. I am trying hard not to bring bad foods into the house, but with other people in the house buying food as well it does not always happen. I caught her eating a chocolate donut that Christine bought hiding in the kitchen after she got home from school today. She LOVES food. She is always asking to taste everything. I think she finds pleasure in foods. She constantly tells me her tummy is still hungry after eating more than a normal size portion for a child. She cries and begs for more food and generally ends up taking her brother's food or eating off mine or Jack's plate. I am going to try to get her to drink a cup of water before she eats and I will do the same thing with her to see of this helps us both eat less. Am I wrong to limit what she eats and to cut her off when she still begs for food? I really don't know what to do next.
Sunday, November 27, 2011
I was very worried I would not be able to find away to get Jacob's equipment up here. His left hip is still very tight and very well may need surgery. I just remember I did not update after his latest appointments before we left. We seen the physical medicine on the 17th. It was absolutely a waste of time, energy, and money. She said she is keeping everything exactly the way it is and for me to follow-up with Shriner's for his hips. He is only 2 months out on the botox and can only have it every 4 months. He is at the max dose on the Baclofen and his neurologist does not want him on Valium. She didn't even order an x-ray to see how his hips were sitting. Just annoys me. I don't understand what her purpose is outside of being another drug pushing doctor is she does nothing besides meds.
On the 18th he had his fitting for TAOs. I have to call tomorrow to see where they are at in the progress of getting the referral from the MD and insurance approval. They said the entire process is usually less than a month.
Back to our trip. My sister had the genius idea of taking the middle seat out of the van and moving the 3 seater seat to the middle which gave us a HUGE trunk space. Next year I do not know what we will do we won't be able to pull the middle seat out ;-) So I was able to bring Jacob's wheel chair, his gait trainer for him to stand in and his feeder seat. Overall he has done well. He got sick on us about 2 days ago and has had a barking cough and congestion. Mommy came prepared though and he has his mobile pharmacy on board helping him get better.
Andrew and Ava are really enjoying themselves. They love spending time with grandma. Yesterday we went to a waterfall in Fort Payne, AL, the day before that we drove to Chattanooga, TN to see my mother's biological mother and got a picture with her and and all the great grandchildren with us. All we do when we are here is EAT! I decided we need to keep a food journal of how many places we can eat in how many cities and states and a road kill journal LOL So far we have been to these restaurants since Monday in the is order LOL O'Charley's Alberville, AL, Shoney's Alberville, AL, Giovoni's Albertville. AL, Shoney's again...same one, Ryan's Chattanooga, TN, and Cracker Barrol Alberville, AL, and Ryan's Fort Payne, AL...notice a trend they are mostly buffets thanks to my dad Oh and this is not counting the various fast food places like Jack's and KFC...the only time we had a meal at home was on Thanksgiving. Today is Sunday. It is our day of rest. No going out to dinner today. We are going to have a nice lazy day at my parents.
Monday, November 14, 2011
From what I have read on their website and from what my friend has told me that these are readily paid for by private insurance and medicaid unlike other walking devices that you have to prove your child can use. They are considered orthopedic equipment just like AFOs. So, technically you can have one of these and another gait training device.
Tomorrow I will be calling the company to set up a meeting with them. My son does not have medicaid currently so my fingers are crossed that my crappy ass private insurance will cover this product...or I will have to wait until I leave my job next year.
The website for the company is http://www.taos1.com/about.html They say the can fit children as small as 18 months up to 23 years old. The height limit is 5 foot tall and the weight limit is 120lbs.
I like THIS VIDEO from the website better than than the ones I found on youtube.
Monday, November 7, 2011
I am also currently researching gait trainers for my son. He currently uses a Rifton gait trainer. He does not do very well in it. He can move it forward, but it is very big and heavy. I recently came across a really awsome gait trainer looking online that I would love to trial...it is about the same price as the rifton. My physcial therapist is going to see if we can get our hands on one around here. It is called a Mulholland Walkabout Gait Trainer. I found a blog from a woman with a spastic quadriplegic son who raised funds to get one. http://www.myangelhascerebralpalsy.com/
|picture I found on the internet of a child in this style walker.|
Tuesday, November 1, 2011
I make Jacob's formula. It is slightly thicker than commercial made formula, but not by much. It is still plenty liquid and has worked in his pump for months until the last few weeks. The pump alarms every 10cc for about the 1st 200cc then it suddenly wants to work. Go figure!
Today will be my 2nd pump in 5 days. We currently use a Kangaroo Joey pump. I have never tried any other pump, but the MD is suppose to write us a prescription today for the EnteraLite Infinity Enteral Feeding Pump I guess this pump is suppose to be pretty awesome. Apparently it even works if it is laying on it side. It does not require it to be hooked to an IV pole in an upright position like the Kangaroo Joey. I hope they can get it to me soon. Another mom I talk to says she switched her son to this pump with the thicker formula and has had no issues with it.
The kids had fun last night for Halloween. Ava was Cinderella and the boys were Rock Stars. I was a bad mom and did not take any pictures of them dressed up last night. I do have some pictures I took of Ava dressed up for a fall festival last week.
|Got the boys hair cut yesterday. (Andrew's 1st professional hair cut) then I spray painted there hair green to go with their rock star outfits. They wore long sleeve red shirts with guitars on the front and black pants.|
Friday, October 21, 2011
So ,I tried not to think to much about the possibility of a nasty furry creature being in my house then this past Monday my husband was laying our area rug back down in the living room when he discovered several droppings behind the couch. Once again I thought maybe they were already there and they left. I have seen no droppings, no sightings, nothing chewed up etc in the house at all.
Then this morning I went to open the window and there they were fresh rat droppings on the arm of my couch. EWW EWW EWW!!!!! Today I am finally out of denial! There IS defiantly a nasty rat in my house!
Tonight Jack, Christine, her kids, and me moved the couches and found a TON of nasty rat poop. We vacuumed it all up and laid stick traps down behind the couch and `1 in the laundry room. The nasty little bastard is probably hiding in my room or something now. I am freaking out. I have check the rooms in my house along the walls and haven't seen any rat poop anywhere besides the living room. I also bought rat poison but I am afraid the kids will get a hold of it.
When I closed the garage the other night a mouse jumped from the top of the garage door, on to the roof of my car, down the hood, and into the storage bins in the garage!!! I thought I was going to pee my pants. I left the garage door cracked open so it could escape. I probably have a freaking pregnant mouse laying babies in my couches with my luck.
LOL Christine just told me I should not tell people about my mouse in my house because the 1st thing people will think is that we are dirty people anf that our house is nasty. LOL I post pictures of my house all the time it is trashed by children but not a "dirty person house". LOL
Christine would like me to announce that she has lost 39 pounds in 2 months. Her tumor appears to be stable still, but they do not have the final report. Her husband is working. The kids are doing good in general. Christine is going in for some kind of nerve block for her head next month to help with the pressure and pain. If it works she will be able to get off a lot of her pain meds. She also just informed her doctor actually told her yesterday that she will have a slow drawn out death. I guess only God knows the answer to that. I have pretty much been living in denial that she will acutally die...she has been doing so good. I told her she was not allowed to die in my house. Last week we were discussing funeral wishes and now that her husband is working hopefully they can save up and pay for her wishes to be done. Thinking about it gives me a huge knot in my stomach .There is so much stuff going on she just simply is not allowed to die.
Wish us luck in Operation find the mouse/mice! The goal is to catch them by the end of the weekend before my kids come home. My skin is crawling just being in my living room think about it being near me...it is probably waiting for me on my pillow in my room though....
Saturday, October 15, 2011
Thursday, October 6, 2011
The good thing is though, when he was sick in the past he was so sick he did NOTHING. Even though he has a cough and mild congestion and vomiting up half his food every day he is still acting like his normal self. He is taking steps, standing, and continuing to be active. He really has enjoyed his gait trainer lately. The more he is in it the more he takes steps. The botox really did great things for his legs. I really feel that he seems to have more control over them since they are a little less tight.
Jacob has a lot of his own equipment now. It is crazy how much this stuff costs! It is also crazy that out of all the equipment he has that insurance only paid for 1 thing. I thank God for the Early Steps program here. Medicaid may have paid for some stuff, but unfortunately Jacob did not have medicaid anymore when the stuff was paid for. I think of how much this stuff cost and it scares me that I will not be able to provide him things that are very useful to him when he out grows the stuff he has. He now owns a bath seat that cost over $400, a Feeder seat that cost over $500, a stander with tray that was over $4,800, and his wheel chair that was over $6,600. That is over $12,000 in equipment!!! and we are not done! Before Jacob ages out of the program the theapist plans to get him a gait trainer. He has one that is a loaner right now.
Andrew is doing awsome. He is saying new words every day. The early interventionist says he is still speech delayed but heck he talks more than some 3 year olds I have met. She wants to increase his visits back to once a week. I was a little overwhelmed when she started and I cut Andrew back to once a month. We are also still waiting for a speech evaluation for feeding therapy for Andrew. He is very picky about what he will eat willingly still.
Ava is doing great at school. She really likes it. She can write her name now and is writing some letters.
Christine and her family are doing good. HER HUSBAND GOT A J. O. B. She goes this month for another MRI to check to see if her tumor is growing.
Here is a video of Jacob taking steps
Sunday, September 25, 2011
I tell you this story to explain how the torture of my nephew James started. Awhile ago my parents came to Florida from Alabama to visit. They brought my sister's son James with them and my sister (his mom) stayed behind in Alabama. I don't remember why they were here just a visit? a funeral? ah not important right now. While they were here my sister Patricia (Aunt Fiki) apparently made him go to sleep at a reasonable hour (not 4am etc like my sister allows) and we totally nearly shaved his head for our own amusement one day (I swear it was Tricia and not me I "fixed it".) ...P.S. his hair was long and in his eyes...he looked like a girl....he was a cute little boy when we were done. :-)
Since this trip my nephew DISLIKES Aunt Fiki A LOT. If he is doing something bad they pick up the phone and tell him Aunt Fiki is coming over etc...this usually get him to do what he wants. Well, apparently last night they found a new way to torture my sweet nephew James. These are pictures I found posted on Facebook this morning. My sister and mom apparently printed a picture of Aunt Fiki's face and taped to their own face. My nephew kept taking the picture off, crumbled it up, and threw it in the trash can. Then they got Jame's dad involved. He took the picture off his face and then went back to the trash can and hid it at the bottom of the can.
Poor poor James wait until he finds out Aunt Fiki is going to be up there for Thanksgiving this year.
|Swwet innocent little James who bites people at random and tortures you while you sleep|
|My mom impersonating Aunt Fiki|
|Jame's dad Steven impersonating Aunt Fiki|
Tuesday, September 20, 2011
I got a phone call yesterday saying I had to attend a meeting to determine the "future of LPNs in the ER" where I work...so I can assume this meeting will consist of go back to school or quit. I am not in a position to go back to school..so I have a feeling in the no so distant future I will be leaving the place I have worked since January of 2004. Once I am "fired" or decide to quit I plan to stay home for a little bit...assuming we can trim our bills and make it work. This decision should "fix" Jacob's medicaid issue and I will probably go ahead and try to enroll the kids in Florida Healthy Kids in January.Then I will be the only one insurance less. I was looking at my mortgage yesterday...I think we may qualify for a modification if we only have 1 income. Our mortgage will then be 36% of our income...apparently they will modify it to be 31% I am trying not to worry so much. I know it is all in God's hands. Once I am jobless Jacob will receive some kind of check, just not sure how much will it be $5 verses $680 who knows....
Wednesday, September 14, 2011
I have had a very eventful day. The morning consisted of Physical Therapy 9:30, Vision Therapy 11:00, Wheel chair guy showed up to change handles on wheel chair 11:30, got kids ready for VPK...dropped off at 12:15, Jill came by and took Jacob for the night!!!! 12:30, Picked Christine's kids up from bus stop and drove across town to their grandma's house 1:30, picked girls up from VPK 3:30, took kids to the park with my friend's kids 4:30, 5:30 took the kids for ice cream at McDonald's and more playing in the play place, 6:30 Jill calls because she broke Jacob......
Yes, Jill's fat roll broke Jacob. She said she was holding him while he was getting a feed and he was crying. She picked him up to sooth him and apparently the tube got caught under her fat roll/button of her pants of something and all she heard was a "pop" ***I'm sure everyone is thinking Jill is a huge fat person...but she is not :-)***There the g-tube was, balloon still inflated no longer lodge in his stomach where it should have been. As you can see from my morning activities I apparently forgot to pack a very important thing in his bag for Jill...the spare mickey button and a syringe for the mickey button :-(
Jill calls me asking what to do (his g-tube has never fallen out before EVER...thanks Jill's fat roll LOL) I was like PUT IT BACK IN! She was like the balloon is still inflated and there are no syringes to let the water out!!! I'm like SHIT!!! cut a hole in the balloon and shove it back in!
I was not home...I was at my friend's house. So, I had to drive home get my ONLY spare button then drive back to the other end of town to her house to "save" Jacob.
Replace the button and Jacob was back in business.
Jacob is still at his Jill's house. He loves her and she is the ONLY friend (not counting my sister) that has been willing to step up and learn how to take care of him...it helps that she is a nurse too :-)
Thank you to Mrs. Jill for giving me a break and a full nights sleep....even if your fat roll broke him temporarily Love you!!!
He is totally only allowing her to watch Nick Jr. though LOL He loves Moose A. Moose!
Friday, September 9, 2011
Wednesday, August 31, 2011
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.
Tuesday, August 30, 2011
Google Search Keywords that brought people to my blog:
Thursday, August 25, 2011
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.
Wednesday, August 24, 2011
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.|
Wednesday, August 17, 2011
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
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....
|3 stolen ladies|
|1 Stolen over sized flower ring|
Thursday, August 11, 2011
To donate: http://www.gofundme.com/6yhzo
Thursday, August 4, 2011
***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|
Monday, August 1, 2011
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.