Merry CHRISTmas!

Wow...it has been a while since I have update this blog. My apologies, but it has been a very crazy, hectic few weeks with the holidays. Everyone seems to be doing great! Logan has been tugging on his ears a lot lately, but we are hoping it's just the teething and not an ear infection!

Logan and Santa

Logan has been meeting so many milestones here lately. Everyday seems to bring something new and exciting that Logan's nurse Rene and I notice. Logan use to not be able to hold his knees up while lying on his back, but today while working with him, he was able to keep his knees up for a good 8 minutes before they went flopping down. These things are huge, and something for us to always celebrate. We have also been sitting him up more with the help of his theratog wrap, which straightens his spine up, so we have noiced an improvement in his trunk strength. Head control is still a huge battle but we will get him there! Logan is arching his back, and smacking his lips more like he's kissing you, and still gives us the sweetest, most adorable smiles, that make your heart melt! He is getting so big! He is 18 lbs 5 oz and about 30 in long! He is outgrowing his clothes so fast. 
In less than 6 weeks, my baby will have his 1st birthday! Where has the time gone? This was such a whirlwind of a year. From thinking we were having a perfectly healthy baby, to delivering him and our world being turned upside down. Waiting for weeks and weeks for a diagnosis, and hoping and praying for the best. The amount of prayers this boy has gotten has brought him through some tough situations. But, I wouldn't change a thing, because in my eyes, he is so perfect, and who can say that a 10 month old inspires them, and gives them a new outlook on life? We thought our lives were turned upside down, but to me, Logan just made my life more complete, and inspires me more and more everyday! We are having Logan's birthday party on Feburary 9th from 1-4pm and we would love for everyone to attend (more to come on that later). It is going to be a huge celebration of Logan's life and accomplishments. Please, no gifts :) If you would like to give anything, please consider a dontation to the Joshua Frase Foundation in honor of Logan Forbis. We got news last week that researchers are ready for human clinical trials! We will find out more next year, but we are soooo close to a CURE, but just need the funding, so please consider :)

We all had a great Christmas! There was nothing better than waking up Christmas morning to a smiling baby! Forget all the presents, Logan just wanted the wrapping paper! He got so many toys, I think he is set until next Christmas. Logan did get a new Britax convertible car seat, that will last him a long time. It reclines to 45 degrees and good head support, which is what he needed. Logan also got a portable DVD player to go in the car so he won't hate traveling so much. Oh, and Logan got a kid cart last week! We are borrowing this one right now to see how he does with it, and eventually order one of our own for Logan. We just need to get the bathing situation fixed. Right now, he just gets sponge baths because he is too big for a infant bath tub, and our spare bathroom is not equipped for Logan and all of his equipment, so I'm not sure what we will do. Medicaid is paying for a generator to be installed in the next few weeks, so if we have any power outages, we will be ok!

Overall, this year has had many ups and downs, but we are past that, and moving forward with this amazing little boy! What is little blessing he is!

We hope everyone had a great holiday season!

Sweet little noises!

Logan a new brand of trachs last week that are thrown away after a week of use. It is a smaller trach so it allows Logan to make some sweet little noises. He loves this new trach and his ability to vocalize some.

He is also rolling over really well and lifting his arms and legs and grabbing toys with no hesitation. Logan is arching his back, shrugging his shoulders, dancing, and shaking his head yes. It is so much fun to see him doing all these new things.

We went to see Dr. Alexander at UNC physical medicine and rehab and he was a fantastic doctor. He ordered for Logan to be fitted for a kid cart, which will hold all of Logan's equipment and support him much better. We also got him a convertible car seat  that is front and rear facing and also reclines. Dr. Alexander also ordered for Brian and I to have a date night. That's something Brian and I haven't had in forever. It's hard when we have respite but we can't use them because there are no nurses available. Maybe one day soon!

We are so excited Christmas is around the corner and we are feeling so blessed!

A trip to the ER

Logan had a rough night last night. He was very junky all night and in to this morning. The night nurse did 2 breathing treatments and when the day nurse Stephanie came in this morning he was still junky. She did a breathing treatment at 8:30 am and again at 10:30am and his secretions were so thick we weren't getting a lot out. After the treatments and chest pt, and having to put him on oxygen for dropping so much, I decided to call the peds attending at Moses Cone. They thought it would be wise to have him cone in and be transported by ambulance. Once we got him in the emergency room, he got a chest xray which looks good, and trach cultures which usually takes 24 hours to grow so we should know tomorrow. Logan is still on anywhere from 0.5-2 liters of oxygen and is requiring lots more breathing treatments and chest pt. Earlier tonight we noticed a bluish green tint on his gauze around his trach, which is usually a sign of pseudonymous....a type of infection. But the want to wait until the culture comes back to see if it's worth being treated with IV antibiotics or a nebulizer antibiotic or something through his feeding tube.
He took a good 2 hour nap today and woke up in a somewhat better mood, but he is still not the happy Logan we know. Whatever it is, we hope they figure it out and get it treated soon. Thanks for all the prayers. We know our little warrior will pull through this minor bump in the road.

Please go vote for Logan!

http://wolfgang.931wolfcountry.com/Contest/3hofOT/UGC/ViewEntry?submissionId=30840

Please go vote for Logan to win the Santa baby contest! You can vote up to 50 times. The first place winner gets $1000, that we could really use!

So much to be Thankful for!

It has been a while since I have updated the blog, but Logan is doing fantastic. It seems like he is getting bigger and bigger everyday. Last week he weighed 16 lbs. 14 oz, so we will soon be hitting the 17 lbs mark, if he hasn't already! I have had a put away so many clothes he has outgrown, and it makes me sad when I see how small he was, but I am so thankful he is thriving. I put our Christmas tree up over a week ago in hopes that Logan would just love to stare at it, but he doesn't care for it too much. Little stinker!
We have been trying to position him differently and get him more in a sitting up position. I bought a bean bag chair last week and it works great for positioning him in an upright position. He gets mad when we take him out of it! Logan is making more noises. Probably not what you are thinking, but it's gurggling noises. Since his trach is a larger size (in width) it is harder for him to push air around his vocal cords to make actual noises, but the gurggling is a great sign that he is trying to make noises.
Secretions have been an issue here lately. We are having to give him breathing treatments more often because his secretions are getting thick, and he is having a lot of oral secretions from the 8 teeth he is cutting. I just worry so much about him being sick, but if he does, it can hopefully be managed from home and not in the hospital.
We go see Pulmonology and ENT in Janurary, and we will probably make an appointment with the Urologist to talk about surgery to have Logan's testicles brought down and pinned surgically. It is recommended that they have this done at the age of 1 and it dramatically decreases the chances of testicular cancer. We hate having to put him through yet another surgery, but it's for the best and not very invasive.
Logan is doing great with physically therapy. He seems to get everything accomplished that Kristen wants him to do. He will start Occupational therapy tomorrow to work on oral motor skills, and I am so excited to see what he is capable of doing. I swear, he is getting stronger and stonger everyday. He is arching his back more, can bring his arms up in a sitting position, and can even hold his head up for a few seconds. I don't know if it's a reasonable goal, but I would love to see Logan holding his head up for his first birthday, and it would be nice to see him sitting up, but I'm not pushing it. It will happen in due time :)

Thank God for Kidspath. They are a hospice organization that manages Logan's CAP/c, and they are angels! They will do what ever they need to do and make sure Logan has everything he needs. They can even bill Medicaid to pay for a generator that will cut on automatically when the power goes out. Thank God, because we were going to have to pay for that out of pocket.
We are getting really close to switching Home Medical Equipment companies. I have to call and call just to get what Logan needs, and it gets very frustrating when they send the wrong items. Plus, the suction machine has stopped working on us and they won't give us an extra one! I think that is ridiculous....what are we suppose to do if it stops working on us and he needs suctioning? It's very frustrating.

We are ready and excited for Christmas with Logan this year!

Anyway, We had a great Thanksgiving! We hope you did too! God Bless :)

Bigger everyday

Logan is a whopping 16 lbs 7 oz this week and ate baby food, yes baby food! He swallowed it down with no hesitation and didn't aspirate! Huge milestone :)

Weekly PT

Physical therapy went really well this week. Kristin was very pleased with how well his extremities are moving, and very flexable. Now we are moving onward to working on trunk control, straightening up his back, and head control. Logan moves his head pretty well from right and left and he can move it up, but doesn't want to move it down because his trach is in the way. But, every week he is making improvements, which is very encouraging! Kristin had Logan in a sitting up position Thursday night but it was hard for her to support his back, shoulders and head, so we have a long way to go. This is another reason why having the trunk vest would be beneficial to Logan, it would serve as an extra set of hands. We just have to keep pushing for his needs.

We are going to be making an appointment with a Dr. Alexander at UNC, who was a recommendation from his developmental pediatrician. Dr. Alexander can make recommendations for things that Logan needs, so we are excited to see what he suggests.

9 months old!

I can't believe my baby is 9 months old! Where does the time go? 9 months ago, we didn't know if we would be celebrating every month that passes by. But we have made it this far, and will continue to make it month by month. And when Logan turns 1, we will have a huge party to celebrate the day doctors said he would never make it to.  The next 2 months are going to be so exciting. I can't wait to celebrate Thanksgiving and Christmas with Logan. He is going to love the Christmas tree lights (I'm ready to put the tree up now just to see his reaction).

Feburary 6th will be here in no time, and I'm starting the party planning...and not hesitating at all!


Logan got weighed today and he's a whopping 15 lbs 14.5oz! He is becoming a chunky monkey!

Thank you for all the prayers :)

So lost...

I'm having a really hard time figuring out what needs are going to help Logan reach his potiential. I feel lost. We want to make sure he has every opportunity to grow and get stronger, and need to figure out our resources. My main concern at this point is, as he gets bigger and longer, what do we use for him to just lay around and play in? He is usually in a boppy on the couch, but is quickly outgrowing it, and I don't want to just lay him on the floor all the time. Do we look at getting a wheelchair stroller, or what? He is also very, very long for his age, and can no longer fit in his baby bath tub, and his bathroom won't fit his equipment in there and the bath tub has sliding glass doors on it. We have a garden tub in our bathroom, but it's hard for me to bend over in that and keep him steady. We are working with a hospice company that can do modifications to the bathroom, but there still won't be room for his equipment. Like I said, he is very long, and will outgrow his carseat very soon. Then what do we do? He still has to be rear facing until he meets the weight requirements, and we are long ways from that.
We had a bad experience with the drug Mestinon over the summer, but we did see an increase in movement, as well as an increase in secretions. But now that he is trached, he may be able to tolerate his secretions better. I think we will probably wait until Logan is a year old to consider it again, and find a different team of neurologist.

The physical therapist wants Logan to wear a vest that could help with his trunk strength, but no doctor wants him to have it because they think it could interfere with his breathing, but we don't know until we try. She doesn't think he will have any issues. OT will start some time this month...thank goodness. Logan's pulminologist wants him to have a few months of oral stimulation before we do a swallow study.

We are still waiting on Medicaid and CAP/c to be approved. It has been a long, upsetting battle, but with the help of so many, we pray it will finally be approved this week. It's just so upsetting when you see people sitting on their butts that are too lazy to get a job, and live off of government resources, but a child who has severe disabilities can't get the assistance they need. I just don't understand why we have to fight for the things he needs to LIVE. It's very frustrating.

Anyway, I'm done ranting. I'm just going to pray hard that things fall in to place for Logan.

Halloween

Brian and I decided to take Logan out trick or treating on Halloween night at a local church trunk or treat. Of course, he was a little dinosaur and an adorable one at that! He likes traveling a lot better since he has been trached. Anyway, he fell asleep after 10 minutes of trick or treating and didn't wake up til 10 minutes before we left. And when he woke up, it was time yo go! He was so mad and hot it took a while to calm him down.

Logan is doing great with physical therapy. This week PT brought a tumble form chair and he did wonderful in it. He held his head up for atleast 10 minutes. We are working hard on trunk and head control. His energy levels are still great. Logan is 15 lbs 6 oz and has 7 teeth now. I can't believe he is 9 months old!

Overall, a great week (Published 10/31/12)

Everything is going pretty good at home. Logan is getting bigger every week. Last Thursday he was 15 lbs 3 oz and this week he is 15 lbs 6 oz. He is still tolerating sitting up pretty well with the help of a boppy pillow and neck rolls. He is definitely getting stronger. He's arching his back and shrugging his shoulders. The boy smiles constantly....it just melts my heart. He goes through so much and is still so happy.
We are excited that physical therapy starts every week as of this week and occupational therapy will start soon to help with oral stimulation.
Today Logan has had thick secretions and has been really irritable. We hope it's the teething and not him coming down with something.


Doesn't he look just like his daddy?

Best appointment yet (Published 10/25/12)

We went today for check ups with Logan's pulminologist, nuritionist, and special infant care clinic. Overall

, everyone was impressed with Logan's progress. Progress....something I have always been afraid that doctors would never tell us. Special infant care clinic recommended some different positions to help keep Logan's spine as straight as possible, and we talked about possible seating devices. I will talk with Logan's physical therapist next week and see what she recommends.
Nutrition was pleased with his weight gain. He is 15 lbs 3 oz! He is slowly getting on track with his weight. They want to see him in the 10th percentile. He's not using all of his energy to breathe anymore, so those extra calories are helping him move more, and thank you Jesus, it's working.
Pulmonary was very pleased with Logan and how well he is doing. She is happy that he is off of oxygen and has his cuff down. We may possibly change his trach to a shiley brand. It's easier to get through our home health supplier and less expensive than the bivona. She doesn't want to make any changes to the vent for the next 3 months. She wants to give him the opportunity to grow and get stronger. I'm definitely ok with that. I don't want to put anymore strain on his body than necessary. But she does want us to do 5 minute trials off of the vent to make him work a little bit. He can tolerate it. We have tried. :) In the next few months we will be considering a swallow study also.
Logan also had a new gtube put in, since he's getting so bad. Overall, it was a great doctors appointment, which use to never happen! We are over the bad and moving forward! We are going to make sure this amazing little boy has everything he needs to grow and thrive!

Moving right along (published 10/22/12)

The past few days Logan has been moving so much, it has just amazed us. He had physical therapy on Thursday, and the PT had a light that spun around really fast, and was quiet fascinating. She kept moving that light around left and right, and up and down, and he followed it without hesitation. That was the first time I have ever seen his head move like that. PT wants to get him fitted for a trunk vest, so that when we sit him up, it can help straighten out his back and work on those trunk muscles while he is sitting. Once we have good trunk control, we will start on head control. One week at a time :) .
Saturday we did the Mud Bug Run in honor of Logan. All the proceeds from the run go to MDA and training for Guilford Co. firefighters. So we were running for the best of both worlds! It was a tough course, but we made it through! Next year, we will have a huge team!
We go see the pulmonologist, special infant care clinic, and nutrition on Thursday. I'm afraid that's going to be a long day for Logan. Please pray for good reports!

Oh how he loves lollipops!

Logan had his first lollipop the other day. He absolutely loved it and got mad when I took it away.

You can check out Logan's old blog at caringbridge.org/visit/loganforbis

Finally!

I wouldn't normally switch up blogs like this, but I did not like the wordpress blogger. So, this will be the new home for Logan's blog!