Monday, June 28, 2010

A big week for the family

We have so much going on around here! This is a big week for our family. We are going to see a maxillofacial surgeon to find out if he can help with Grayson's sleep apnea. His apnea is what is keeping us from getting his trach out. I am trying not to think so much about it, but its kinda hard not to. Also Grayson is finally feeling better from being sick with his virus and tummy infection. He is taking the majority of his calories without gagging! So now maybe we can get back on track with him gaining some weight back. He lost 2 ounces from his last weight check, which is a total bummer, but considering he was sick with fever and respiratory issues it could have been a lot worse. I have some prayer requests that I need to mention, I have dicovered in the last few weeks that Grayson has temperature regulating issues. I did not know that this could even be an issue, but guess what? It is and I don't really know how to deal with them. I have learned that he can not tolerate being hot. When we go outside even if its just for a few minutes his little body temp goes way up! Yesterday it was 103! So I was freaking out and stripped him down to a diaper, as well as laid cool compresses on him put him on the floor with a fan blowing on him, tylenol too ( it worked). I think it takes him about 30 to 45 minutes to get regulated again. Now let me say he was cracking up laughing at me the whole time this is going on, which he does on a regular basis (he is such a boy).Plus he loves to be naked like most other kids his age. I am looking into a coolong blanket for our next big purchase to see if this helps him with traveling while its so stinkin hot outside! So far everything i have found is for adults not kids. Really looking forward to this weeks cooler temps so then maybe he can get out and not be so miserable. We are outside people and I know he would love being outside too if we can get this figured out. Until the weather is less hot we are indoors for sure. So I am praying that this is a very temporary issue for him, and that God will heal him of any issue that may be causing this. With God ALL things are possibe :)

Friday, June 25, 2010

What's next for Grayson

As a mom you learn what each cry means with your baby. Well, we could not hear Grayson cry because of the trach. The trach is located underneath where your vocal cords are and when you talk you push air above the vocal cords and that is how there is sound. With a trach there is no sound. This was one of the hardest things to overcome for me a I learned all about trachs. As his airway got stronger and his lungs developed, he would make sounds over top the trach, even though they are very airy sounding its a little peice of heaven to hear them. The goal with an infant or anyone with a trach is for them to be able to wear a speaking valve. This is a little button thingy that goes over the trach and forces air above the vocal cords so that they have the ability to use their voice! Its the absolute coolest invention for parents who have never heard their childs voice or heard them cry because now we can!!!! Grayson could only tolerate his talkin button (that's what we call it)for a few seconds at first, but now he wears it all the time:) We are able to hear him giggle and coo and i swear he is trying to say mama! We know that this is the next step to removing the trach, you have to be able to breath with your natural airway not an artificial one (trach). So, we were told there is a series of things that Grayson needs to be doing to have the trach taken out, first no vent...CHECK,second come off his oxygen during waking hours....CHECK,third tolerate speaking valve...CHECK, now our big mission is to be able to tolerate the trach being capped off (basically you put a lid on it so you have to breath on your own). We are working on this one its still new to him, we just got it not too long ago. The other issue is dealing with some mild sleep apnea, and thats kinda scary because it may take a surgery to correct that. We go next week to meet with a very highly recommended surgeon to find out if anything can be done. If he can not help us then we may be headed to Cincinnati for a very lengthy stay to find out if their big docs can help him. Either way I just want to know! If he is going to keep the trach, then fine, I know how to care for him with it. I just want to be his mommy and not have to worry about all these things on a checklist anymore! He is perfect in my eyes with or without it, and he is soooo happy! I am ready to just enjoy the little boy that God gave us, and has blessed our family with and these other things can just be secondary.

Wednesday, June 23, 2010

the blended diet

For the past three months I have been blending Grayson's food up in the blender. I also keep track of his calories in a food journal. It takes extra time, but I feel like it is completely worth it. Up until this point of this new diet I gave Grayson a infant or toddler formula, this is truly easier, but he gagged and gagged almost constantly! He can't throw up because of his nissen ( a surgery for the stomach which keeps kids from being able to throw up and asparate which is very dangerous for trached babies). We also had him on a continuos feeding pump every night for about 8 hours. This pump was what was delivering the majority of his daily nutrition. So, Grayson would wake up full, how backwards and unnatural is that? Don't get me wrong, I am glad that there is this option because at first this is how he got his nutrients. But for a child that already doesn't want to take food by mouth to wake up and never feel hunger and then to gag everyday and be miserable. So I had to do something different! He was losing weight and developed a hernia so I prayed that God would give me a better way of feeding him, that did not include synthetic formula or a pump. So I began learning how to blend natural food that your body digests more quickly thin enough to get through his gtube. This definately has its own set of issues because the tube is very small. After talking to our nutritionist and figuring out his dairy, protien, carbs, and liquid requirements I began the blended diet. Some days its better than others, but no matter what he is happier, healthier, and all these other things started happening, like his hair came in thicker, he has more energy and stamina through his therapies as well as he has been sick less often! yeah:) My blend for a full day for him goes something like this, it varies from day to day, 1 box of boost( down from three) 1 avacado(pureed with apple juice), 1 jar of baby food chicken, 6tsp of olive oil, 10 tsp of whole grain infant cereal, 3 oz of pureed fruit, and 2 oz of yogurt and 4 tbsp of syrup for extra pack on the LB's calories. This makes a lot for his little tummy to handle, but because its more digestable foods and not so heavy it digests better. Tomorrow he gets weighed and that always wears me out because I need that scale to show good weight gain! Its so hard not to measure my success as his mom by that darn scale! I never counted a calorie in my life and now I am a total freak about it. So we will see. Sayin prayers tonight for a good day with the nutritionist tommorow!

Saturday, June 19, 2010

Weekend plans

So this weekend is Father's Day, and we are celebrating this year at my parents house, which also means packing for a full day with Grayson and all his equipment. This is probably my least favorite thing about getting out of the house with him. The alternative is never geting out of the house which let's face it you can go nuts if you don't get out. I don't think people realize what it takes to take a child out that has physical limitations not to mention a trach or feeding tube. So, here is the list, trach bag(emergency supplies for trach) this goes wherever he is even if its just for a walk around the neighborhood, suction bag for suctioning trach, oxygen tank for when he falls asleep and we are not at home, monitor(measures his oxygen levels and heart rate), then we still have to pack his backpack full of diapers, extra clothes, gtube supplies and food for him, and of course his favorite toys, then his rocking chair (which he can now tump backwards and giggles while mommy is completly freaking out). We have to now baracade him in everything whether it be his chair or whatever because he figures out a way to get out of it or roll off it. Which is kinda funny because our docs didn't think he would ever do much more than lay around with very little movement. Let's just say he kicked out that theory at about six months old. So as you can see it takes a lot to go out for the day. On the other hand, when you have help(husband, 2 big kids aka packmules) it makes it much easier. These guys never complain about carrying his equipment, or packing it the van for me even in the rain, they just do it. I've trained em well(haha). To think I used to complain about having to carry a diaper bag HA! This equipment won't always be a part of him, but for now it is and like any other situation in your life you just simply figure it out. We love him and its what you do :)

Friday, June 18, 2010

Good to be Home

When we git home from the hospital you would think that I would need a nap or just need to sit and do nothing, but not so. I suddenly get this burst of energy and can't wait to get things unpacked and definately washed. Anything that has been inside that hospital has be be washed and cleaned. Plus you feel like you need to reclean your own house too. Then there is the pile of phone calls that need to be made, such as calling all of the therapists that you had to cancel for the week because you weren't home, and making the follow up phone calls to the doc's that need to check him to make sure he is recovering properly. Soooooo exciting right??? The best part is when Grayson realizes that he is home and he just looks around a smiles and touches everything around him that he can reach as if he were saying hi to it! It really takes a day or two to get readjusted for all of us. Luke and Will haven't had their mom for a few days and Jay hasn't had his wife, plus we haven't had them with us either. One way I show my love for them is by cookin up somethin yummy. Sooooo mama got to bakin and cookin, baked italian chicken with linguini and lots of cheese, parmesan garlic drop biscuits, salad, and by special request (William) hershey brownies. After a very long sleep deprived week for Grayson and I both its good to be home and back to our normal routine.

Wednesday, June 16, 2010

Updates on Baby G

We are going home from the hosptal today! We have been in here for three days now, which is so much less time than it used to be, but all test that we were waiting on have come back negtive (YEAH) and he is back to his cute lil self, minus some very interesting diapers lol. Lookin forward to some good family time with my hubby and big boys as well as sleeping on a regualr bed. I never enjoy hospital trips, but it is so good for me to see how much our nurses, docs, and respiratory therapists love Grayson and our family. They are very good to us. Last night I asked for prayer from a whole lot of folks, and today we are going home with all tests results in our favor. It can only be a God thing! Prayer works and I believe in miracles because I get to see them on a daily basis with my kids and our life with Grayson. Remember to thank God even in situations that seem like they are too much to handle. More to come later :) gotta pack up this room to go home!!!!

Tuesday, June 15, 2010

What a day!

Not exactly how I wanted to spend my summer Monday with the boys, but like i always say things can change quick at the Hill house. I like it better when they change for the better, but today God had different plans for us than what WE had planned. Grayson had been running a low grade fever for a few days so i was concerned that he was catching some kind of junk, so I took him to the doctor and they did a direct admit into the hospital (yuck). So here I sit in a pediatric hospital with my sweet boy wishing they didn't have to poke him, stick him, and give him these big medicines that typically cause diaper rash. I am thankful that he does not have pneumonia, which was the concern when we got here. (I did not think it was that, I thaught it was tummy related and a trach issue)but it's a virus in his lungs and their is no infection in his trach woohoo! The good thing is I am in an actual room now not in the ICU where there is no bathroom in your room and you have to walk forever to get to one. Each time we stay here I just get humbled all over again, it makes you even more greatful for the little and big things in your life. I miss my husband and my kids! Grayson misses them too:) Soon I will post some fun not so serious stuff.

Monday, June 14, 2010

Meet the boys

Well like most kids they are rowdy, funny, silly, sometimes stinky haha, and always ready for some good ole joking on mom. Luke is a typical teenager, he is driving now which is very scary, starting his senior year in August( i am not old enough for this part), and has a very full social calender. William is our almost tweenager, he loves video games and has the most sweetest dispostion of any kid I have ever known. The glass is always half full not half empty in his eyes. Then Grayson is our 2 yr old, (don't think I could've spaced them out any further lol). Grayson has been through more in his 2 years of life than most adults. He was diagnosed at about a week old with Sotos Syndrome. This very rare syndrome has brought a whole new way of life for our family. He has a trach, a feeding tube(aka gtube) and sleeps on oxygen at night. Our boys have learned the true meaning of unconditional love. We are truly a family that has overcome some major obstacles. Grayson spent about 10 weeks in the NICU, then had several lengthy hospital stays after that, and meanwhile Luke and Willam remained supportive, generally happy and very understanding that we had to take care of Grayson and they got pushed to the backburner. Now that we are not staying in the hospital all the time(praise God) they have learned to laugh through the stressful time, and make me crazy and keep me sane all at the same time. God is so good. He purposfully picked my boys for me and WOW I am blessed.

welcome to my blog

I created this blog for family and friends and all the wonderful people in our lives that always are asking "what's going on with the Hill's" and "How do you do it, raising three boys, one with special needs?" My hope is to give a glimpse into my regular family with extraordinary circumstances. I hope you enjoy my posts and my pictures, and i will do my best to give updates as things are always changing around here. God bless you and thank you for taking the time to read my blog.