I have been terrible about updating out blog as of recently. Our day to day life is nothing short of a wild roller coaster ride, the main goal being keeping all four of my lovely boys alive, second to feeding, bathing, clothing, and entertaining them. :)
Having three under three and a sort of big seven year old helper has been interesting. Gavin and Gabe still have therapy daily, Xavier has biweekly baseball games and normal summer adventures, and Ethan is keeping me on my toes with his intent on being a part of everything mama has going on.
The twins are still getting physical, speech, occupational, developmental therapies and seeing a nutritionist all once weekly. It keeps us very busy along with all our specialty doctors appointments and just keeping our day to day life straight.
Gavin will be 2 years old August 2nd. That is when they stop adjusting age. For all the new readers he has Spastic Quadriplegic Cerebral Palsy secondary to Periventricular Leukomalacia. He also suffers from GERD, vicious cycle constipation, diphagia, aspiration, and sensory issues. He is still being orally fed. We are successfully bi-passed the feeding tube for the past 6 months and hopefully we keep on the up and up and can orally eat the rest of our lives. :) He is now 34 1/2 inches tall and 23lbs 8oz. He is starting to sit independently for short periods of time. He is really enjoying his borrowed Squiggles Stander and Rifton Pacer while we wait for our own. Our therapists and doctors have also ordered him his first wheel chair, a Kid Kart. Hopefully having a tilt in space chair with a tray will allow him to work on his fine motor skills while feeling safe in a supported environment. He has definitely mastered the art of the belly crawl and can now belly crawl over objects, turn around, and back himself out of corners. He is starting to say 2 words together and can now spontaneously say about 20-30 words. :) He is still very hoarse and does still have motor planning issues when it comes to his speech so sometimes it may take 2 or 3 tries before the words come out. Today he was crawling around saying "ga... gabe....gabe...break it."
Gabe is everywhere! We are now a walker. He still has lot of tone issues in his hip abductors, knees, ankles and toes. He has successfully over come his upper body tone/ While still there, he can functionally use both arms for age appropriate tasks smoothly now. He still has a lot of balance and coordination issues. We have lots of bumps and bruises. He is still having feeding difficulties as well. We are still on a level 1 nipple and have to thicken to nectar consistency. He still swallows just about everything whole and doesn't have the best sensory control and often overstuffs when it comes to meals. He is growing like a weed though at just shy of 35 inches and 28 lbs. While hes 5lbs heavier then Gav they really don't physically look different. The CP clinic doctors just explained that Gabes muscle mass weighs more.
Ethan is a little turkey. We are about completely potty trained as we approach his 3rd birthday. We are peeing in the potty during the day and wear a pull up still at night. Most days he wakes up dry, but I think he just wants them for security. He gets very emotional with accidents.
Xavier is keeping us busy with his 7 year old antics. We are dawned the age of sarcasm in our home. Xavier just "looooves to do his chores." :) It is bitter sweet seeing our little boy grow up. It is so exciting the skills, questions, and conversations he initiates now but it is sad that he doesn't think he needs our help anymore. It really makes me sad how much kids his age are exposed to and how fast he is growing up. It really makes me think even harder about homeschooling the three little guys.
As for Tim and I, we are getting married June 21st so we are been in the midst of wedding planning. :) We are having a small wedding with about 80 people. It should be a good time. I have also planted a massive garden this year. I am determined to bring the homestead to our small home, even if we are in a small rental. Our Landlord has been very gracious in letting me plant a 14x30ft garden at the back of our lot and scatter by containers and raised frame beds around the property. This year is my first year gardening and I hope we are able to can enough to supplement part of our grocery bill this summer through spring. Tim is currently trying to find new employment and we now make too much money to get assistance with the boys so we are sort of stuck in between a rock and a hard place. Food stamps used to supplement the Pediasure the boys drink. Now we have to find a way to pay for it and food out of pocket with less money then we had before. It all seems so backwards.
In my garden this year I have planted: sunflowers, wild flowers, garlic, pumpkins, radishes, carrots, cucumbers, jalapenos, cherry tomatoes, potatoes, beans, broccoli, spinach, lettuce, strawberries, corn, onions, 4 tomato varieties, red bell peppers, green bell peppers, sweet basil, purple basil, oregano, sweet mint, lavender, a raspberry vine, and a blueberry bush. This month I plan to add sweet potatoes, water melon, winter squash, pumpkins, more corn and beans for a later harvest, and to replant my lettuce. I am also hoping to plant a second fall garden after we harvest and turn over this one in late August. I plan on planting beets, more broccoli, cabbage, carrots, cauliflower, peas, lettuce, turnips, garlic, kale, and a second set of spinach. My spinach is currently bolted to seed so hopefully I can successfully harvest it in order to replant.
We are also trying to cut costs this year by hopefully buying a deep freezer. That way we can can some of our produce and freeze the rest. If we get a deep freezer we will probably also buy half a cow from a local farmer.
I am also trying to work into our tiny over stretched budget a clothesline. We currently have a clothes drying rack we were gifted (from my mom :) ) that we use daily but we really need a large line for the 6 of our clothing, towels, and linens. It would save tremendously on electric and help our clothes last longer as well. I registered for one or if we get money for the wedding that will be one of the first purchases :) fingers crossed.
I am officially down 40lbs since January. My blood pressure is now low to normal and I have a check up today. :)
I am also thinking about updating and revamping the blog. While it is mostly about the boys I would love to figure out how to categorize my posts with gardening, the boys, saving money, living green ect. So changes may be coming soon!
Showing posts with label gait. Show all posts
Showing posts with label gait. Show all posts
Tuesday, June 10, 2014
Thursday, December 12, 2013
equiptment galore!
So besides the much unanticipated conversations about the g-tube we have some things to look forward too...
Gavin is finally getting fitted with some equipment that will help support him in order for his body to properly grow, provide support in order to learn new skills and interact with us as a part of the family. Gabe as well! I am BEYOND excited.
It will provide lateral side support as well as head and neck (with his optional headrest included). It can be turned around to face me when pushing or out forward. It also has the tilt in space feature to recline! Now when we go places he will have a place he feels safe and secure that can accommodate all his needs.
Obviously not in pink! His will be a little different but this is a general idea. He will be able to lay on his belly tilted up flat, his back tiled up flat, or stand erect in it. It will also have a place to hook on a tray in order to stand and play. Standing and not being in a chair will allow him a "regular" point of few as well as decrease his risk of blood clots in his legs from being stationary.
His will be a little more involved with a chest support and head rest. But this will give Gavin the opportunity to learn to walk and be mobile!!!! I am beyond excited. I think just having the opportunity (even if progress takes a while) will boost his self esteem incredibly!
We are also getting a Rifton Bath Chair as our infant bath seat is becoming to small for our growing boys :)
Gabe will only be getting a walker. He is doing so well progressing in his skills. We still have a mild delay but he is starting to catch up!
He will be recieving a Rifton Pacer.
It will be about as involved as the picture. Gabe really just needs it to learn to walk correctly with his new AFOs and to provide some stability as his CP causes muscle weakness in his lower body. He bares a lot of weight in his upper body when he takes steps. Our hopes are to one day graduate to crutches or hopefully to walk unassisted! But for now this is it.
We should receive our stuff within the next 4-6 months.
Equiptment!
Gavin is finally getting fitted with some equipment that will help support him in order for his body to properly grow, provide support in order to learn new skills and interact with us as a part of the family. Gabe as well! I am BEYOND excited.
It will provide lateral side support as well as head and neck (with his optional headrest included). It can be turned around to face me when pushing or out forward. It also has the tilt in space feature to recline! Now when we go places he will have a place he feels safe and secure that can accommodate all his needs.
Obviously not in pink! His will be a little different but this is a general idea. He will be able to lay on his belly tilted up flat, his back tiled up flat, or stand erect in it. It will also have a place to hook on a tray in order to stand and play. Standing and not being in a chair will allow him a "regular" point of few as well as decrease his risk of blood clots in his legs from being stationary.
His will be a little more involved with a chest support and head rest. But this will give Gavin the opportunity to learn to walk and be mobile!!!! I am beyond excited. I think just having the opportunity (even if progress takes a while) will boost his self esteem incredibly!
We are also getting a Rifton Bath Chair as our infant bath seat is becoming to small for our growing boys :)
Gabe will only be getting a walker. He is doing so well progressing in his skills. We still have a mild delay but he is starting to catch up!
He will be recieving a Rifton Pacer.
It will be about as involved as the picture. Gabe really just needs it to learn to walk correctly with his new AFOs and to provide some stability as his CP causes muscle weakness in his lower body. He bares a lot of weight in his upper body when he takes steps. Our hopes are to one day graduate to crutches or hopefully to walk unassisted! But for now this is it.
We should receive our stuff within the next 4-6 months.
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