A day in the life

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!

Slacker.

As a special needs family we have been very busy. The last post I put on here about the boys I was coming to terms with Gavin having a feeding tube put in. After our consult with a pediatric surgeon we decided to go a different route and continue working on therapy and weight gain without surgical intervention. So far we are only up about 2 pounds over all since December but our pediatrician is ok with taht because Gav is still in the 30th percentile.

The boys are doing very well over all! We have had two colds, the stomach flu, and a bought of roseola, which was scary, since I last updated. We just finally ordered some equipment for Gavin but now we have to wait for up to a year for insurance to approve and send it. He will be receiving a Kid Kart Express, Squiggles Stander, Rifton Gait Trainer, and we already received our Rifton Blue Wave bath chair (which is AWESOME!).

Since my last post we as a family (minus dad who half participates) have gone Gluten free, all organic, and limited dairy. I have lost 19 lbs since January :) and the kids have a better attention span, Gavin's eczema has improved, and we are over all feeling better and more energetic!

Ethan just tested out of occupational therapy, though we still have some mild sensory issues. His developmental testing put him at 44 months of age and hes only 30 months old. I was one proud mama. :) We are still waiting to hear if he will have an opportunity to test into public pre-k or if he is too smart and will have to try to go to a church provided pre-k here in town.

Gabe is walking! He is finally taking indenpendent steps around the house. He still has a gait and sort of walks without bending his knees but he is doing better then we ever expected!

Gav is finally starting to work with the My First AAC app on the ipad to work on communication. Unlike Gabe who can say over 200+ words and 3 word sentences now, Gav is still only saying 2-3 words total. He just doesn't have the motor planning skills to put it all together. He is also starting to sit independantly for a few minutes if you help him get into criss cross and prop his elbows on his legs or give him a toy to play with! He also has surgery scheduled for March 31st. He has two testicular hernias that have to be repaired. More on that to come!

That's all for now :) I'll just to update soon.

It's 62 degrees out and I'm itching to get outside!

It's finally all sinking in

After days of research and speaking to friends, family, and professionals the past couple of days, our, well, only option, seems to be sinking in. Our array of therapists have been a great support in encouraging us that this doesn't have to be permanent, that he does need this to gain weight (because we've been stalled for a few months now), and it will just improve his overall quality of life.

It will look something like this.

Our nutritionist thinks that since he can handle large oral bolus feeds, 8oz pediasure bottles, that we should be able to completely forgo a feeding pump and just do gravity fed bolus feeds with a syringe. This means he will not be a slave to the pump, won't constantly have a long tube from his belly to the pump that could be a major cause for accidents.

Plus you can decorate and accesorize! We can make this fun for Gav as well as for the other boys. They make "belly button" covers, which not only decorate but also have added medical benefits which absorb, reduce friction, and protect.

  

They also make binding bands with turtle shell openings to have access that provide added protection and stability

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It's also starting to sink in that the button won't limit his life anymore than his Cerebral Palsy already does. I think it's just going to take a little time to adjust and learn, and for Gavin to heal.

We have our surgical consult on Tuesday morning so I will be sure to update after!

G-tube. The day has arrived.

Well Gavin had his swallow study yesterday. They noted that he has insufficient suck/swallow. He has deep laryngeal penetration on all flow levels and consistencies, and aspirated on all flows faster then level 1. They suggested that we may need to "consider alternative feeding methods (other than oral) for meeting nutritional needs and efficiency of feeding."

What they were dancing around ever so politely was that Gavin was needing a feeding tube, which we have tried so hard to avoid. They stated that we are at a critical fork in the road. We could continue down the path we are on and potentially and subsequently compromise his respiratory system and subject him to chronic illness or we could surgically place a feeding tube into his stomach for liquids and still continue to do oral feeds with solids or controlled bolus's. He passed with flying colors on solids because his neuro-motor control is stronger. The liquids he's drinking are seeping into his lungs and he doesn't/cannot cough to expel them. Essentially he is drowning on dry land a little each bottle he drinks.

They said absolutely no water or thin fluids via bottle or sippy cup. He did excellent with pudding/applesauce/banana/and pb&j while we were there. The attending physician just said that consuming solids would tire him out too much to consume fluids. They recommended only offering the Pediasure in a level 1 nipple *but with fatigue he has at risk for aspiration* until we come up with a plan. So today we set the gears in motor. I contacted the ordering physician, which was his ENT, who said at this point it isn't a structural issue he can fix surgically but one we would have to refer to our general pediatrician to follow up on. I placed a phone call to her nurses, and tomorrow we should have a plan. There aren't really any excellent pediatric GI surgeons in central Illinois, as it seems we live in a pediatric medical dessert, so we will most likely have to go to St. Louis Children's. We still have to follow up with Gavin's Urologist about his scrotum/testicular surgery and schedule his eye surgery. We are going to try to do some combination of them so he only has to be put under once or twice but I just don't want to overwhelm his body too much to compromise his ability to heal efficiently and without infection.

It is the right step for us at this point. Gavin hasn't gained any weight in almost 3 months. Gabe is now up to 27 lbs while Gavin has been hanging tight at 22 lbs. He is also only meeting 50% of his fluid/nutrition needs daily now because drinking the pediasure is either becoming too painful or he is becoming disinterested in drinking 5 vanilla pediasures a day for his fluid needs and then being too tired to consume food.

I will update as soon as we have more concrete information.