Stepping out of MY shell

I am in no way ashamed of Logan. He makes me so proud. BUT I hate the looks we get out in public. I hate how people stare at my precious boy for all of his equipment and entourage of people. What annoys me most are the stares and head turns we get when the suction is turned on. This is something he has to have to survive.  Most of it is just curiosity, I know, but as a mommy it's hard to see Logan get these stares. I want him to be seen like anyone else, normal. Because his life is normal to us.

  I am a total germ-a-fob when it comes to Logan. I know that I cannot always protect him from every little germ, but I do Lysol and clean the house quite a bit. Anyway, after leaving Logan's doctor appointment yesterday, something hit me. We have NEVER taken Logan out to eat with us. Never. I use to cry when Logan came home from the NICU and we couldn't take him with us somewhere. I guess I have gotten use to being a hermit and keeping Logan and myself indoors a lot. But I have to say I have come out of my shell some. He has been camping, to the beach, and a few other things. But this fall Logan will attend Gateway and I can't hide all those germs from him. I have to let him get sick, and be exposed. I never want to see my baby sick, but I also can't keep him sheltered either. I want Logan to experience life and see places and things, and that started yesterday. Logan, myself, Logan's grammy, Nurse Rene, and Nurse Angeline went out to lunch. It felt great to have him out with me, and not wonder what he was doing at home. Logan threw his toys on the floor, did a little dance in his chair, and played patty cake for us. The perfect lunch.  For once I didn't care about the stares and head turns when the suction was cut on.  We had a great lunch and Logan really enjoyed the new environment. So from now on, I'm not going to shelter Logan. I want him to live his life to the fullest in whatever he is doing.

Today we lost a great nurse. Rene has been with Logan since the week he came home from the hospital. When Logan came home he was so weak and couldn't even come off the vent for a few minutes. Now Logan is really trying to sit up unassisted and is off the vent 8-10 hours a day. She was incredible with him. We are really going to miss Rene, but we know she will be back one day.

Yesterday Logan had his appointment with his GI doctor. He was a little concerned with Logan spitting up what looked like coffee grounds. He said it was definitely blood, and it's probably irritation from the severe acid reflux. So, the plan is for Logan to be started on a new med which will hopefully prevent him from throwing up and get his gut working better, in conjunction with his reflux meds. Logan will also start taking miralax everyday to help with the constipation. We go back in a month and will probably schedule a upper GI to see what's going on, and if things don't improve, then Logan will probably have to have surgery to have a Nissen done. Hopefully the meds work and we don't have to put him through yet another surgery.

Friday we take Logan to Gateway for his intake and to find out when school will start. I'm very excited for him, but nervous at the same time. I hope his little body can tolerate it.

Until next time...God bless!

 at lunch :)

It's been way to long...

It has been way to long since I have posted an update on our lives. We are staying so busy. We are thankful that both Brian and my jobs are very busy and all our other time is spent with Logan.

Logan is doing so great. He has gotten his back brace and AFOs. He doesn't mind the AFOs at all, and is gradually getting use to the back brace.
We have tons of appointments this month. We see his pediatrician tomorrow for his 18 month (I can't believe it) check up, next week he goes to see a GI specialist here in Greensboro for all of his tummy troubles, and to the MDA clinic at Wake Forest to meet Logans new neurologist. Also next week Logan goes to Gateway for his intake for the infant toddler program. He will start school after Labor day we think. At the end of the month Logan goes to see his pulmonary doctor too. Its a very busy month for sure.
We are looking for a minivan to purchase so that we can get it converted to be wheelchair accessible. It will be a lot easier to travel with Logan since he will be going to school everyday. I'm so excited that Logan will be going there everyday for therapy, playing with other kids, and learning, but I hope his little body can tolerate it everyday.
Logan is up to 25 lbs 12 oz right now. We were working on increasing his feeds because his weight started plateauing and he started getting constipation, throwing up, and throwing up dried blood. That's why he's going to see a GI doctor. Hopefully its nothing serious.
Right now, Logan can hold his head up pretty good, blow kisses, holds his arms out to be picked up, can almost roll onto his belly, mocks what you do, takes the vent off when he is ready, shows you when he needs to be suctioned, and waves hello and good bye. He's such an incredible little boy! Oh, and not to mention he's off the vent for 8 hours a day now!

I promise to try and update more :)

Nightly struggles

Nursing has always been a struggle, not just for us, but for anyone who has a special needs child. Night nursing is our problem. We have two companies involved in his care, and I was told, "Oh this will make life so much easier and less stress for you, mom". Well, I beg to differ. We have always had great day nurses, and we turned to this second company to help cover mainly nights.  But the past 6 months and some of the nurses we have had to deal with were a complete nightmare. I'm praying hard that we can get this issue resolved soon so that we are less stressed about nursing. I had to call out of work today because I have no nursing. I felt like this issue could have been resolved if the nurse would have had the common decency to show up for her shift. I hate calling out. It's not fair to me, or my job. I'm trying to help support my family and people like these nurses who don't really care, ruin this for me.  I don't understand it, but then again, I'm not totally surprised.

I'm praying hard that this won't be an issue much longer <3

Little beach bum

We are on our way home from the beach and it was bittersweet! The second day we were there I was worried that Logan couldn't tolerate the salty, humid air but after breathing treatments around the clock and lots of chest PT, his secretions finally thinned out. Thank God we took nurse Lynn with us. She was a life saver and allowed Brian and I to get some sleep. Monday we took Logan out to the pool. At first he really hated being outside. He got something in his eye and it was watering and swollen and was miserable from that. Tuesday we kept Logan indoors and it helped clear his eye up and was a happy little boy. Wednesday morning we took Logan to the beach. It was much cooler than the other mornings. I've never seen him happier. I swear if he could walk we would never get him off the beach. Thursday morning we took Logan out to the beach again. We took family pictures and let him check everything out. He was out by the pool from 11am to 4pm and enjoyed it so much. He hated the water so much! Friday we took Logan out to the pier and let him look at the fish that people were catching and let him look at the ocean.
All of Logan's first cousins were with him a few days and you can really tell that he loves being around them. He takes in everything that they do....literally.  The other day Logan was trying to pick cousin Emma's nose!
The trip couldn't be more perfect. At first I was very timid about having him out in public and the stress of something going wrong. Logan can change at the drop of a hat, and his secretions are still very copious at times. But, we will take the challenges as they come. Logan needs to get out and see the world and I won't be the one to stop him.
We are looking forward to going back to the beach again next year :)

2nd father's day

We got down to the beach yesterday afternoon and it wasn't too bad getting Logan down here.  He did get really dry being off the humidifier for so long and did get a few plugs. We had to use lots of saline to get Logan thinned out. Once we got to the beach house Logan was ready to go! He was so wild but it was great seeing him happy in a different place. :)
Today was a different story. Logan woke up happy but was very junky, even after treatments all night. Its a new climate and he's trying to adjust. Once he was clear we took him, the vent, and humidifier to the pool at our beach house. Logan was fine but started rubbing his eyes and fell asleep. When he woke up he was a mess. Thick secretions, blood coming from his trach, and a fire red eye. He brought him in and it probably took 2 hours to get him settled. His eye is still very irritated but hopefully will be better by morning. Overall,  it was a great fathers day for Brian. When we were out by the pool Brian wouldnt leave Logan's side. He's such a attentive, caring daddy. We are so blessed to have that <3

Finding humor the best way we can

It's been one week post surgery and Logan is doing fabulous. We were worried that surgery would set him back but it has made him stronger! One ball down makes him more of a man (gotta find humor in these things). We will see if this testicle survives, it's usually a 80% chance it will, and schedule the 2nd surgery for 6 months from now. The 2nd surgery will be more extensive. They will have to make a cut in his abdomen to extend the blood supply for his right testicle. I'm not looking forward to this surgery but I'm sure he will do great. :)
Logan has been making lots of noises, and is back to saying mama...which makes my day! He is also sitting up unassisted for 5-10 seconds, which is amazing. It shows his strength and determination every time we try it. Sometimes he likes to be silly and lean his head over so he can fall. He thinks it's so funny and laughs.
Tomorrow Logan finally gets his wheelchair stroller and gets his big boy bed on Thursday.
Things are looking great around here. We take a week long beach trip in less than a month and are so excited that we can enjoy it this year and not be worried about Logan being unstable. I just can't wait :)

The BEST mother's day gift possible

Being a mother is a job, but being a mother to a MTM boy is special job. We are super moms. We have had crash courses in respiratory therapy and in nursing. When know when something is wrong immediately and we know more than most doctors. Logan has a life threatening disease. Some days that is hard to take in, and other days it's not even thought of. Everyday with our little guy is a gift. Seeing him thrive and get stronger is very rewarding....almost like winning the lottery. I know that we are doing all of the right things to see the achievements that we have. Being a mother is so rewarding, but being a MTM mom is 1st place in my opinion.

Yesterday Alison Frase came to visit us. Alison just has such a sweet spirit about her and is so compassionate about our MTM kids. We learned from Alison about these colonies of MTM puppies that were born from affected MTM female dogs. These puppies at 17 weeks were so weak that they were dragging their hind legs and not able to eat on their own. They were pretty much to weak to live, like many of our MTM kids, and passing away. Then another litter of pups were born. These puppies were given this gene therapy injection at 9 weeks old, and 2 weeks after this injection, these pups muscle mass improved by over 200%!!!! These puppies were running around like nothing was wrong. I saw the videos myself. Everything about these dogs improved. Able to run, eat, and respiratory insufficiently was no longer a issue. The kicker to a of this is that this could be a ONE time injection for our kids and improvements are seen in the first week of injection. This is going to cure our kids and change the world of neuromuscular disease. If hearing this was not the best mother's day gift, I don't know what was. 2 years is the hope for clinical trials.... all we have to do is keep the funds coming in.
Brian and I have discussed having a HUGE benefit to help raise funds for the Joshua Grade Foundation next year. If you would like to help, please message us.

We are on our way to chapel hill for Logan's surgery. I will keep everyone posted.

Sitting up unassisted!

We love our physical therapist Kristin. She is on vacation this week, so one of her coworkers came and worked on Logan this week. Lesley saw Logan when we first started PT and he was very weak. She was totally surprised by Logan and the things he is doing. Well, she was sitting him up with support, and said hmm I wonder if he will sit up unassisted? Lesley let Logan go only holding her hands by his side in case he fell over. Logan sat up unassisted for a few seconds!!!! Huge milestone!! He still has a long way to go but kicking butt along the way!

We are getting ready for Logan's surgery on Monday and we are very anxious to see how he does with anaesthesia. Sunday we have a special visitor on Sunday. More to come on that later :)

The pinch heard across the world

As a mother, it is hard to just let anyone care for your child. I have a hard time letting new nurses that no absolutely nothing about the disease or how to care for Logan. I know, they must learn, but I'm his mommy and if I don't like something that's being done, I will speak up. We had a new night nurse practitioner that started about a month ago. She has been struggling with keeping Logan clear and clean up her messes, so I asked the nursing company to let her train again with one of Logan's other night nurses. The other night Logan was very junky and she yet again struggled with clearing him out. That morning Rene had a hard time clearing Logan (which is not unusual when we have this night nurse). When Rene went to do Logan's weekly trach change in this picture below is what she saw. The night nurse pinched Logan's neck with the trach tie and this was the end result. This has happened before, but this is by far the worst. What I don't understand is how she couldn't be aware of this all night? I'm so mad that words can't even express it.

This is exactly why I have a hard time trusting new nurses.

A very long update

The past few weeks have been a little crazy. Logan has had lots of appointments and we took our first camping trip.

We saw Dr. Southerland (Urology) a few weeks ago. He had ordered a renal ultrasound to make sure that Logan's kidneys and bladder were working good. Ultrasound showed that Logan's right kidney was full but his bladder was empty. Dr. Southerland wants it rechecked in 6 months, so I don't think he was too concerned. Logan had some blood work done back in march to make sure he is producing testosterone. Luckily, after a HCG shot, his testosterone levels shot up, so we know that testicles are there! His surgery is scheduled for May 13th, and the bronchoscopy will be done at the same time. I don't think Logan will have such a hard time recovering from surgery now that he has his trach. :) We are hoping to only be in the hospital for 24 hours.
Logan also had a swallow study the same day. It didn't go like I thought that it would, to say the least. The first taste he got was a spoonful of food. He has only had taste. I know that Logan was overwhelmed by the amount of food in his mouth. He did however swallow, but couldn't complete the swallow. It sat in the back on his throat and was eventually aspirated. He was given more of a liquid and was able to get more of that down, but it is hard when Logan is on the vent. The pressure from the vent pushes up whatever is in his throat, and can push it up through his nose.
After the swallow study, it was recommended to see Dr. Alexander, who is Logan's physical medicine rehab doctor. He is amazing, and can get us whatever we need. We go see him on May 7th, so we can get recommendations for speech and vital stim.

Logan was put on Amoxicillin last Thursday for yet another ear infection. Man, I tell you, we can definitely tell when he is getting sick. He gets thick secretions, and lots of them. It's much harder to keep him clear. Anyways, Friday he started puking randomly when he was getting fed, and it continued throughout the weekend. Finally on Wednesday I had enough of it. Brian and nurse Rene brought him to the ER and we found out that he is allergic to Amoxicillin. We got his antibiotic switched to Biaxin and he is doing great with it. No spitting up since then.

Last weekend we took Logan camping with no nursing. Just Brian, Logan, and myself. It felt good to be a family without nursing, although, I love our nurses and don't know what I would do without them! Of course Logan was not feeling the greatest, so it was a little rough at night time, but overall, it was a successful trip. We are looking forward to the next one.

Logan went to the eye doctor today and had a great check up. Dr. Young said that Logan is near sighted, and may or may not need glasses later on. There are no scratches on his corneas and he said that Logan's eye lashes are soft and he is not concerned with them rubbing on his eye balls. He said that they should grow out as Logan continues to grow.

Logan got his vest a few weeks ago. The vest is used for chest PT and really works for him! He hated it at first, but now he goes to sleep and makes noises when it is shaking him :)

 

 

 

Overall, it has been a great few weeks, and Logan is doing great!

As I lay here thinking about today's adventures, I can't help but wonder about the future of my family. We take one day at a time, as we have for 14 months now. I had a very important appointment on Friday that opened my eyes to something I never thought would be an issue.  I can't go in to details because decisions have to be made, and every aspect needs to be considered, but just keep us in your prayers so that the right decisions will be made.

A day with Logan

My mind runs a million miles a minute most of the day. Trying to work to make a living, and schedule our lives around doctors appointments and appointments for home visits, do house work, cook, and make sure I spend quality time with Logan and Brian, I feel like I need two of me. Things can be very stressful at times, but Brian and I are thankful we have great jobs, and bosses that care. Without that, we really would be lost. A day with Logan is a full time job...it's nothing like taking care of "healthy" child. It's more like taking care of a child that is sick all the time. Although yes, Logan has a genetic disease, but he's pretty stable, but still considered sick.
I just wanted to walk everyone through a day with Logan. I'm not asking for a pity party from anyone, but I just want everyone to know the real reality of taking care of Logan.

7am- Breathing treatment, Xoponex, and chest PT
7:30- Bath in the tub with PMV or thermovent on, or sponge bath with PMV on. Gtube & trach care done after bath.
8-9- Move Logan to the living room and suction a lot because of the breathing treatments.
9am- First bolus feeding & meds given, oral care done also
9:30= Flush gtube and flush feeding bag
10am- More chest PT & gets down on the floor for exercises
10:30- PT on Wednesday for 1 hour- Working on head control and supporting the spine
11:30- OT on Monday's for 1 hour
12-1pm- Usually napping
1pm- Bolus feeding
1:30pm- Chest PT to clear secretions
2pm- Usually playing
4pm- Bolus feeding & flush 30 min. later
5pm- Breathing treatment & chest PT before bedtime
6-8pm- Playing, watching TV, usually asleep by 8pm
8pm- Bolus feeding & meds given. Flush 30 min later
10-pm- Put in crib, diaper changed, humidifier filled up, and everything restocked.
11pm- Bolus feeding & flushed 30 min. later, rotated from sides to back
1am- Breathing treatment and Chest PT given, trach care and gtube care done
2am- Bolus feeding, and flush 30 min. later, rotated after feeding
4am- Breathing treatment & Chest PT given
5am- Bolus feeding & flush 30 min. later

So as you can see, unless he is sleeping, Logan is a full time job, Thank God for our incredible nurses that help us care for Logan. There would be no way that I could do this everyday and work.


Logan is doing pretty well after his hospitalization. He will be finished with antibiotics tomorrow, and I can't wait. Poor thing has had a upset stomach ever since he has been taking it. We are going to UNC on Thursday for Logan's ultrasound, meeting with the surgeon, and his swallow study. I can't wait to finally see what Logan is capable of doing.
Swallowing is such a task when he is on the vent, so we will see.

Back to normal

We got to come home Friday afternoon, which was a great thing. Trach cultures came back positive for pseudomas sensitive to Cipro. So, Logan is on cipro for 10 days. It can be very harsh to the stomach. It can cause thrush or yeast infection so we have been giving Logan some yogurt with active cultures in it to fight these things off. Poor thing has had diarrhea  for a week now. But I am happy to report that Logan is pretty much back to his normal. He still doesn't want to come off of the vent any, but is tolerating his PMV trials inline with the vent. Logan is talking so much right now. I have been able to get him to say "mama", "dada" and he has started saying "nana"! Such a smart little guy :)

Next Thursday we are going to UNC for Logan's ultrasound, appointment with Urology to schedule surgery, and his swallow study. It's going to be a busy day and I hope Logan does well with it all.

We are getting all kinds of new equipment for Logan. He's getting a vest for chest PT (which he hates), borrowing a kid cart with a vent tray until ours comes in, and Logan is getting a big boy bed soon! His bed will be able to recline him, and has rails on it. We are super excited :)

The battle of our first illness with a trach

We all know by now that traching Logan saved his life. If it weren't for this trach, Logan would be critical right now. It all started on Monday. I myself was very under the weather. I was running a fever, and really congested, so I stay out of work. I went in to the living room were I know Logan would be with his home health nurse, and there laid Logan on the couch, fast asleep at a time that he is usually "wide open". Logan was sick. That began the battle. Monday Logan did a lot of sleeping, and had copious amounts of secretions. Tuesday was way worse. Logan woke up with a fever, he was pale, and requiring o2. We took him to the pediatrician and they said he had a double ear infection and put Logan on antibiotics for 10 days. Tuesday night I was very busy trying to keep Logan clear with breathing treatments and chest PT. When I went to bed he was very restless but his lungs were clear. I was exhausted. I didn't really have time to take care of myself because I was too busy taking care of Logan. I took some cough syrup and went to bed. Wednesday morning was total chaos. Nurse Rene came in at 7am to a very sick little boy. Logan was cold, and crying, and Rene just picked him up and wrapped him in a blanket and cuddled him. After that, things were kind of blurry. All I remember is Rene was doing very aggressive chest PT, Logan was on 4 1/2 liters of oxygen and still desatting into the 70s. We did a emergency trach change, which changed his sats a little but not enough to get him in the high 80s. We called 911, and packed everything up. Logan was pretty unresponsive, sweating, white as a sheet, and didn't look good at all.
We got him in the ER and they did a chest xray which looked good, bloodwork, and a specimen out of his trach. He was admitted into the PICU. They decided to keep him on his home vent and try not to make any adjustments. He was given a dose of Rocephin for the ear infection, and didn't want to start any other antibiotics until the trach culture came back. Well about 5pm we were suctioning Logan's trach and he started desatting into the 70s again and after putting him back on the vent, Logan was white as a ghost and not responding. After bagging him for a few minutes we decided to do another emergency trach change and put him on the hospital vent. They did a stat chest xray and showed pneumonia in his lower left lung. Vancomycin and Zosyn were started last night.
Today Logan's xray looked worse. It showed a partial collapsed left lung. Logan is not Logan. It breaks my heart to see him hurting and in such discomfort, and there's not much I can do to fix it. I hate that feeling. He is so weak, he can barely crack a smile today. I hope tomorrow brings more energy for him. We started back his bolus feeds tonight and he handled it like a champ, so hopefully he will have more energy tomorrow. Keep those prayers coming. I'm afraid that this illness has really set Logan back. We were suppose to go for his renal ultrasound and swallow study tomorrow, but of course that's not going to happen.

On a lighter note, I got a call from the Urologist on Tuesday, that Logan has great testosterone levels, so those testicles are in there somewhere! Once we have the ultrasound done we will be able to schedule surgery along with the bronch.

A whole new meaning to Dr. Mom

They say that mom knows it all. That we go with our instincts and do what we need to do. Well today was a true testament to that.

I was sitting in the floor with Logan changing his diaper. When I sat him up to move him, he did this huge coughing number followed by a very odd look on his face. I sat him up in his chair and suctioned him out, and proceeded to start his feeding. I sat down beside him and all of the sudden his pulse ox was going off and he was desatting down to 88%. His face was very flushed, he was sweating a lot, his heart rate shot up, and his vent settings started to change. At this point, I'm in Dr. Mom mode. Logan has this very blank, almost freaked out look on his face. Oh God, his lung was collapsed.

I started giving him Xoponex inhaler to open up his lungs, then I gave him a 3% saline treatment to try and loosen everything up in his lungs. I did this twice and then put Logan on his stomach and did chest PT like crazy to knock whatever had plugged him up loose. Thank God after about 15 minutes of this Logan's sats and vent settings started coming up and we have avoided a trip to the hospital.

Logan is doing much better now. He's watching Mickey Mouse and fighting sleep. :)

These are very scary moments indeed, but when it comes to my baby, I will do my everything to make sure he is ok. 

Logan continues to "bloom"

Every now and then I get down about everything I have to see Logan go through. Sometimes searching for inspirational quotes gives me the push I need to overcome those feelings. Today, I ran across this quote:
"We, the ones who are challenged, need to be heard. To be seen not as a disability, but as a person who has, and will continue to bloom. To be seen not only as handicap, but as a well intact human being." -Robert M. Hensel
This is a beautiful quote and describes Logan so well. How could I not smile reading this?

Over the past week, Logan has really shown himself. His head control is getting better and better and his back and spine are getting stronger. Using Logan's theratogs, it really straightens up his scoliosis and helps is kyphosis (hunch back). Yesterday I got the brilliant idea to put Logan in his theratogs and put him in his bumbo seat we have never got to use. He did fabulous and sat by himself and held up his head for 2 minutes without our help. It was a proud moment for Brian and I. :)

The next few months are going to be pretty crazy for us. Logan has lots of appointments coming up, we are switching to a new home medical equipment company, and trying to tweak some things that we think he would really benefit from. We are excited to push him and see what he is capable of doing. We will keep everyone as updated as we can!

Much love <3

Contagious smiles

What a contagious smile this boy has!

Logan is doing fabulous. We are trying to get appointments set up over the next month. Logan is having a swallow study on March 29th, we are meeting the Urology soon to discuss surgery to have his testicles pulled down during his bronchoscopy, and he is also having a sleep study to tweek Logan's vent settings during sleep. They think he could be over ventilated.

We cut back Logan's feeds last week and spaced them out more because Logan has gained a good amount of weight since September. It just goes to show how well he is doing. Before he was trached weight gain was a huge struggle, and now, he's gaining it too fast!

Overall, things are going great. Logan is doing very well. He benefits so much from PT and OT and smiles all the time. We are working on getting Logan use to his ipad and trying to get him to do some sign language, which he's not interested in. He's more interested in trying to talk :)

Never say never

He won't be able to sit up, hold his head up, talk, eat, or walk. Those are things we were told for so long. No, not anymore. Past docs that see Logan now are amazed by the strength of this boy. How inspiring is that? It's amazing how inspiring a 12 month old can be!
Logan got his theratog vest on Friday, and I was amazed by how much it helps him. For the first time EVER, I could hold Logan just supporting his back  a little bit and didn't have to hold his head up. He actually loves it too! This could eventually be the key to Logan sitting up on his own.

A PROUD mama's testimonial!!

I haven't been able to update the blog since Logan's birthday. It has just been total chaos. His party was on the 9th, and it couldn't have been more perfect. We had such a great turn out for his party, Mickey Mouse everywhere, great food, and great cake. It's amazing to see the amount of support that we have all in the same building. It was overwhelming, and beautiful. It's amazing that a one year old can inspire so many people. Not many parents can say that.
We had Logan's birthday party at the Greensboro Moose Lodge because we had a feeling it would be a big turnout. There were about 150 people in and out for the party. Logan loved all of the attention. He loved it so much, he took a nap in the middle of his party. Logan got to eat some icing off of a cupcake, which he LOVED! We were able to donate $500 to the Joshua Frase Foundation, plus other donations that were done over the internet and by mail. Helping the JFF fund research for a cure, is the best gift Logan could possibly have.

As Logan's parents, we want what any parent wants, and that's the best for their child. We have to fight with people sometimes to get what we know he needs. Once we get it, and Logan shows them what he IS capable of doing, they had wished they would have done it sooner. There are NO LIMITS with this boy. We took him to UNC today for a passy muir valve trial. For those of you who don't know what that is, it's a valve that is placed on the end of the trach that allows Logan to vocalize. They were very nervous about doing this, because they thought Logan was such a medically fragile child. Let's just say that Logan gave those speech pathologists, and RTs a run for their money. They first put the passy muir in line with the vent tubing. Logan immediately started smiling and kicking his feet. He vocalized a little bit, but they were worried his vent settings might change and he couldn't tolerate it. After being on it for 15 minutes and very impressed, they decided to try it without the vent. Logan is doing 2-3 hours off the vent during the day now, so it was no issue taking him off. Logan was on the passy muir for 20 minutes and still going strong. He had no tracheal secretions off of the vent, which was really surprising for Rene and myself! So noises won't be anything that's going to happen right away. It will happen more often as he gets use to it. RT said that the passy muir will not only help him come off of the vent much faster, but it would also help with swallowing. They are being very aggressive with Logan. A swallow study is in the very near future. At least once the swallow study is done, we will know what he is capable of doing, and what speech needs to work on.
Logan is getting noticeably strong to every one that sees him. He is able to make noises on the vent, without a passy muir, he can make a noise with his mouth and tongue, he has a very strong bite, he is attempting swallowing and sometimes completing a swallow, he can raise his arms up in the air, hold his head up unassisted for 60 seconds, sit up assisted for as long as you help him, he is starting to wiggle his butt, he can kick,  he can lift his legs in the air and grab them with his hands, he can clap, he can say "mama" and "dada", he's off of the vent 2-3 hours a day, and now we can say that he can tolerate the passy muir better than any of us thought he could. And to think, these are things we thought he might not ever do. The littlest things are a huge celebration to us.  The boy is full of endless possibilities!! Once gene therapy is in place, I cannot wait to see what he can do!
As first time parents, we don't ever think something like this could happen to your child. We never, in a million years would have imagined having Logan being this way. But this is Logan. He is his own, unique, individual, and we are VERY PROUD that he is our son. I use to say that Logan is disabled, but I have learned that he is not disabled, he is DIFFERENTLY abled.  I use to watch people as they would walk by us and see Logan and all of his equipment, but the more I think about it, I stopped caring. They are just curious, and you would be surprised how many people see through all of the equipment and see Logan for the sweet, determined little boy that he is. How could we not be proud?

Okay, okay, I'm done gloating! God bless!

Mickey's trach

Mickey had his trach placement yesterday. Logan was comforting him! Mickey is recovering nicely and will have his gtube placed shortly :)

The big ONE!

Logan turned the big ONE yesterday! I remember a year ago, we were so excited to finally meet our son, but very nervous at the same time. I had developed polyhydramnios (excessive fluid) that last month and couldn't feel Logan moving. I had weekly ultrasounds because I couldn't feel him, he was breech, and the fluid kept building up. My OB was concerned, but there wasn't much we could have done, but just wait until 39 weeks and take him then. I was miserable, my feet were so swollen they were purple. At 39 weeks and 1 day, we had Logan via C-section because he was still breech. They prepped me in the OR and Brian came in. It was time to have our baby boy. They suctioned over 4.5 liters of fluid out of me....talk about feeling relief! It seemed like forever before they finally pulled him out. I remember Dr. Lavoie saying "Are you guys ready to meet your baby?"  Of course!!! At 5:36pm she pulled him out, but there was no cry, no nothing, just silence. The put him under the warmer and started working on him. That really felt like eternity. Brian looked over at me, and I knew then, something was really wrong with my baby. That operating room was so quiet you could hear a pin drop. I couldn't contain the tears anymore. They finally got Logan breathing and he was brought to me where I got to kiss him for a second and then we was rushed to the NICU. They immediately put Logan on cpap. Meanwhile, I was wheeled into recovery where I was hysterical. I knew they wouldn't let me go up and see Logan until I started getting some feeling back in the my legs. I just laid there crying, and praying for my legs to move so I could go see my baby. Finally, after 3 hours in recovery, they wheeled me up to the NICU on a gurney so that I could see Logan. There he was, laying under the warmer, so lifeless, and no color to him. He was so tiny...all 5 lbs. 9.5 oz of him. That night I got my feeling back in my legs by 3am, and Brian wheeled me up to the NICU to see Logan. I got to hear him cry, it was very weak and high pitched, but it was a cry. It was the happiest day of my life, but also one of the scariest.

We had such a great day yesterday. I woke up hearing the sweet noises of my baby boy, which is becoming more common every day. He was laying in his crib watching his Mickey Mouse clubhouse and nurse Rene was getting him ready for his bath. Rene had bought him some balloons, which he loves right now. Logan grabs the strings and tugs on them making the balloons float around. Rene takes him off of the vent while he's getting his breathing treatment and bath. Logan doesn't mind it at all, since he is distracted by Mickey and balloons.
Logan's case manager came out to the house yesterday and did Logan's recertification for his CAP/c, which is a Medicaid waiver program that pays for Logan's nursing. CAP/c is also paying for a generator which was installed last week. This generator will power the whole house, minus a few little things. They also gave Logan is HUGE sucker, which he wanted to devour, but mommy wouldn't let him eat it all! It was almost as big as him!

Carolina Mobility came out yesterday also. Logan got fitted for a new bath chair and a new kid cart with every accessory he could need. These should arrive in 3-4 months.

Overall, we had a great first birthday...even though daddy had to work.

We are so blessed that Logan is here on his first birthday after all the close calls we had before he was trached. Traching Logan was very scary for us, and a huge change for all of us, BUT it has saved his life!!!! It has made his quality of life much, much better. He's a strong, resilient little guy, and always smiles. How could you be sad about that? He's here, he's happy, and he's getting stronger. What more could we ask for?

Saturday we are celebrating Logan's birthday with our family, friends, coworkers, and community! Thank you to everyone for the prayers and support!

What a year! 6 days until we celebrate!

6 days from now Logan is going to be 1!! Where does the time go? It seemed like just yesterday we finally got to come home from the NICU after 10 weeks of waiting and waiting. We were trained on how to take care of him and what to do in case of blue spells (which we had a whole lot of), and sent on our way. Doctors basically told us, go home and enjoy your time with him. Neurology made the comment when he was 4 months old that they were still surprised he was still alive. How is it that doctors can say these kinds of things? They have no idea what kind of life he was going to live other than basing it on the literature they read. I am ashamed that I felt this way when Logan was born, but I think my feelings were perfectly normal. I was mad at the world. I wanted to know why God was punishing us for giving us this sick child. I was hurt and I was scared to love him. But as time went on, I learned that I wasn't scared to love him, I was just scared to lose him. I was scared to feel that empty, alone feeling. I know any parent could feel panic when the thought crosses their mind of losing their child. It's a sickening feeling, and I had it all the time.  There were times that we almost lost our precious baby. But I turned to God, and I prayed and prayed. He answered my prayers every time, and I knew then not to question the things he does. It all happens for a reason.
 
Logan is a miracle. He was born in to this world with a purpose, as any person is, but his purpose was met from the day he was born. He taught me that life isn't about the materialistic things, cherish each moment, tell everyone you know that you love them, pray unconditionally, don't worry about what others think, and always keep a positive attitude. He didn't only touch my life or Brian's life, he changed everyone who met him. His beautiful smile, big brown eyes, and sweet personality make you fall in love with him all over again. For a child that has gone through so much in this first year of life, he always smiles and doesn't have a care in the world.  He is my first born, and even though things didn't go like we thought they would, he is our perfect little boy. We didn't get to experience Logan coming down from the nursery, changing his first diaper, or his first bath. Those things really bothered me at first, but then I realized we had bigger problems. Being told that your child may not ever sit up, crawl, walk, talk, or even eat by mouth devastated me. Where were never going to be able to experience those exciting times every parent dreams of. But, as time has gone on, and he has gotten stronger, those things don't matter. Because I know that Logan will accomplish his own goals on his own time, and there is no time limit for that.

 All those tubes and wires don't mean a thing. It's a part of Logan and it's apart of his and our life. They don't make who he is. One thing that has amazed us with our community is they see past those tubes and wires, and see Logan for the amazing little person that he is.
I was asked not to long ago, "What gets you through the day, and how do you deal with it?"
My answer was as simple as this:  "Spend 5 minutes with Logan and you will see."
I don't think I could have said it any better.

The past year has had many ups and downs, but to see Logan and how well he is doing now, makes everything worth it. He's growing and getting stronger everyday, and he's so incredibly smart, we are just nothing but blessed.

Thank you to everyone that has followed our journey and supported us along the way. We couldn't do it without all of the love, prayers and support.

God bless :)

Logan's trip to UNC

Last week we took Logan to UNC for a check up with the pulmonologist and ENT. Both doctors were so impressed with how well he is doing. ENT wants to do a bronchoscopy in the spring to check out his trach from the inside and to check on scar tissue and make sure there is no infection in his lungs. We are hopefully going to get Urology involved at the same time and have Logan's surgery to drop his testicles at the same time he is getting the bronch. I hate for him to have to go through yet another surgery, but this needs to be done so there are no risk for testicular cancer.
We are waiting on appointments to be scheduled for a swallow study and a passy muir valve trial. We think Logan is so ready for a passy muir valve. He is making noises over the vent now and we are loving it! Every now and then we can get him to say "mama".

Yet another infection

Logan is fighting off infection around his trach site again, but also has yellow oral secretions. I took it upon myself to get in touch with the nicu attending at Cone this morning, told them what was going on, and was stern that Logan was not coming to the hospital. She was not easily persuaded because she had never had Logan before, but I explained that we were not risking putting him in the hospital for a infection we could fight at home. The doctor agreed to let Logan's nurse get a tracheal aspirate specimen and we would turn in to the lab and see what grows. So we are waiting on labs and being extra cautious. Logan's sleeping a little more, has more thick secretions, an odor, and not as playful. I think we caught it soon enough.

Missing nurse Rene

Logan's day time nurse Rene left yesterday for New York for a week. So, we are having fill-in nurses until she returns. Boy, the nurse we had today was something awful. She ran Logan's 9am bolus feed as a continuous feed and it just kept running and running. We sure do miss you Rene, but we are so glad that you get to see your kids and meet your new grand daughter! We have Katy covering tomorrow, which was one of Logan's primary nurses at UNC, then we have Stephanie this weekend (yay!), and Lynn on Monday and Tuesday during the day. Today was just a little bumpy.

We have become so attached to all of our nurses that care for Logan. I'm sure the nursing company doesn't show much appreciation for their nurses, but we are so grateful we have some good nurses that we can trust to be in our home without us and care for Logan. So, thank you to all of our wonderful nurses!

Rene
Lynn
Stephanie
Katherine
Katy
Eyssielee

Trials off the vent

Last week I talked with Logan's trach nurse at UNC and convinced her that Logan was ready for trials off of the vent. She went for it, and sent the orders to the nursing company so that Logan's nurses could do the trials. That was the best convincing that I have ever done. He was so ready to come off that vent some during the day.  Logan has gotten so much stronger than what he use to be. He has changed his vent settings on his own. He doesn't need all of the pressure of the vent or the breaths. He does most of the work on his own, except when he is asleep.
Trials are going great. We are suppose to put a thermovent on his trach when we do these trials. A thermovent helps keep the humidity in his trach, and allows him to still breathe through it. Logan hates these thermovents! Without one, he can do 20-30 minutes off the vent, but with the thermovents, he won't do more than 15 minutes before he is mad. But, today we tried a different kind of thermovent, is he likes this one a lot better, and stayed off the vent 45 minutes today. GOOO LOGIE!

Weight gain is still going great. Logan is up to 19 lbs 10 oz and showing every bit of it!
PT went really good last week. Kristin, Logan's PT got him to hold his head up and turn it left and right with minimal support for 30 seconds. Well, since then, I have been sitting him up on the couch and Logan has been putting his head forward and holding it up on his own without any support. Months ago he never would have tolerated this. It's so amazing to see the progress that he has made just in the past few weeks. He is one amazing little boy.

We go to Chapel Hill next week for Logan's 3 month check up with pulmonary and ENT. I'm excited for them to see the progress he is making. Logan could possibly be having a swallow study and a passy muir valve trial when we go.  Wish us luck!

Just a little "fluffy"

Logan's nurse Rene says Logan isn't fat, he is fluffy! He is by no means fat, he's just long, and skinny, and finally starting to fill out. He weighs 19 lbs. 1oz, and he is almost 30 inches long. He is growing so fast, and I can't believe he is 11 months old! He has 12 teeth now, and is cutting 4 molars!

All of Logan's nurses and his respiratory therapist that comes out to the house once a month to check the ventilator, are convinced that he is very much ready to be weaned from the ventilator. We can take Logan off of the ventilator for 15-30 minutes at a time and his o2 levels don't budge. We go see his pulmonologist at UNC on the 24th and are hoping that she will start weaning his vent settings or start doing vent trials. We also want to request a Co2 monitor to see what his Co2 levels are before and after a vent trial. Keep your fingers crossed that we can start getting this boy off of the vent some during the day.

On February 9th we are having a huge birthday bash for Logan. 10 months ago, we were wondering if we were going to make it is far, and now we are getting ready to celebrate this amazing little guys 1st birthday. Logan is doing so great right now, and is the healthiest he has been ever and we not looking back!

Keep Logan in your prayers over the next few weeks :)