14 Months Old

We're happy to say that Nick is as lovable, stubborn, charismatic & adorable as ever!! He is doing good & responding well to his physical therapy sessions with Suzanne & Lisa, not to mention with grandma & grandpa too :) He is getting long & chubby (or pleasantly plumb as mamma calls it) , so Kris says we need to cut back on his calories. He seems to be responding well to that as he's lost a few oz & is now at 21.3....Nick continues to show no signs of seizures & we're considering asking the doctor to lower his medications to see how he responds. Unfortunately, our lil man does not really want to eat. He will take a few spoonfuls a day but isn't interested in any more than that. We know when he's had enough when he shuts his lips tightly down!!!! We're actually taking in him for surgery tomorrow to place the G-tube through his tummy. The feeding tubes we've been using since Nick got sick were only a temporary solution. I'm scared to death but know that God is with our son & will protect him & the doctors & nurses who are responsible for his care. When we laid him down to bed tonight, I couldn't help but squeeze him tighter & longer than I normally do each night. This lil guy has such an amazingly beautiful, strong, courageous, loving soul. I cannot tell you how honored I am to be his mom. My son has taught me so much in his 14 months of life, more than I ever knew possible. I pray that tomorrow he fights with the same tenacity his shows us every day & recovers quickly from his surgery. We'll keep you posted with how everything goes once things get settled back at home. We are truly blessed to have such an amazing circle of support & love from all of our friends, family, community & church. We thank all of you for your prayers & love. Jenn

Nicky Update

Hello Everyone,

It has been a long time since our last post, so we wanted to update everyone on how Nick is doing!

Over all, things are going well with Nicky and we are happy with his progress. His first birthday party was great, and it is hard to believe he is already one year old! He has been very busy lately, and we are very proud of him!

We recently met with a pediatric cardiologist and ophthalmologist for two critical examinations. The first is his eye exam. It went well for the most part and we will see the doctor again in six months. The second important annual exam is the cardiologist. This is because his condition can cause problems with his heart. Well, we were beyond thrilled to find that his heart is perfectly normal. After all of his challenges, our little man deserves to have something that works perfect. Did I mention how proud we are of him?

We were also able to go on vacation last month in Orlando. We were with Grandpa and Grandma Ruhana, Uncle Jimmy, Aunt Lori, and Cousin Colson. We are sure glad that we did because Nicky did great! He was calm on the plane, and it turns out he is very responsive to fresh air and warm weather. There was a noticeable improvement in his energy level and his physical therapy for the whole week was great. One night, he held his head up for over 30 minutes which is a major accomplishment for him! We were also happy to find that the swimming pool relaxed him. He slept well and we think the swimming pool helped. Although he had a good week, he gave us a scare on the last day.

Nick woke up around 3:30 on Friday and was coughing a lot and uncomfortable. After speaking with his nurse, we learned that Nicky's throat is getting irritated by the feeding tube, which leads to his resistance to swallow his saliva. This causes the coughing. So, we have decided it is time to remove the feeding tube from Nicky's nose for a more comfortable solution. Our support system suggests that a tube be surgically inserted into Nicky's stomach, which is what will be used for his food. We met with the Doctor this week for a consultation, and he feels this is our best and most comfortable solution for Nick at this time. We are planning the surgery for next month. This does not mean we are giving up hope that Nick will eat again one day, and in fact, he eat a good portion of his rice cereal with his Grandma this week. It is just the best solution to protect his air way right now.

The procedure will not be easy for Nicky and the poor little guy will be in the hospital for three nights. The surgery will also postpone Nicky's next experimental treatment until July, but we feel he is stable and have made the decision that this procedure must take precedence over anything else right now.

I've said before that we can never take for granted that Nicky is breathing. His breathing is strong and he is consistently at 100% oxygen. The doctor thinks that removing the feeding tube will help his breathing and eating as well.

The seizures are still under control, but Nick has something we do not liked called "involuntary muscle movements". These are movements are where Nicky will randomly flinch. They really set him back, but we always know that we must be grateful that he is not having the same seizure he used to have last year that would last for 10 minutes. Thank you God and please keep protecting him.

Nick's physical therapy has REALLY been great and as I mentioned earlier he will still eat from a spoon and swallow once in a while. His Grandma Ruhana is best at getting him to eat consistently and I hope she knows how much we appreciate all of the effort!

He has certainly gained a lot of weight. Nick is over 20 pounds now! We have to watch his weight and diet very closely, and Nurse Kris is happy with his progress right now!

It is a miracle in its self that we celebrated Nicky's first birthday and we thank God every day. Time and time again, our family and friends have told us that love and prayer would help Nicky and now we know that it is. Thanks to everyone!

Happy 1st Birthday Nicky

Hello everyone,

Well, Nick did it! He reached a major milestone by turning one today, and we celebrated with two great birthday parties. He received wonderful gifts, including a lot of summer clothes for our trip to Florida next month. He will be the best dressed little man in Orlando! He finished today by showing off with great head control and eye contact before falling asleep tonight!

It is a wonderful feeling to celebrate his first birthday. He is getting big and growing fast. We are enjoying every moment. We are blessed right now and God is taking care of our little boy!

The New Year

Happy New Year!

January was a great month. We celebrated New Year's Eve with a nice dinner while Grandma watched little Nicky, and returned home early enough to ring in the New Year with him.

We are delighted that he is still seizure free, and gaining a lot of weight! The little guy is 19.3 pounds! As I think back to August, he was only 11 pounds. In fact, Nurse Kris may put him on a baby diet because he isn't able to burn enough calories. So, Father and Son may have the same New Year's resolution of getting in to shape!

We are also happy to say that Nick is now 11 months old and we are already planning his 1st birthday party! His Birthday is February 21st, but we think his party will be on the 20th. We are going to have a huge party for him! After all, Nick is doing well and we have a lot to celebrate!

The prayers are helping, and we are thankful every day for the support from every one.

A few weeks ago, I was working at home while Nicky was laying on a blanket. He was laying on his stomach, and I would look over at him every couple minutes to see what he was doing. Well, twice, he rolled over to his back! It was exciting! He still has a long way to go, but we are thankful for every day and that he has the opportunity to work with great therapists. His Grandma and Grandpa do a good job with his Physical Therapy too, and it is showing. It is hard for him because he is always very tired from the medication and the illness, but he moves a lot more than he did just a few months ago.

Nick is also still very vocal and can really express discomfort; he has is own little way of crying. We have heard it a lot lately because he now has two little teeth showing!

He is not interested in eating from a bottle, but we are able to get Nick to eat from a spoon once in a while. It does not happen often, but we are very happy when it does!

He recently beat a pretty bad cold. We saw it as a great sign that his immune system is still working well!

Also, Nicky's breathing has been great and I always have to mention that we are most thankful for that.

Nick had his monthly neurologist appointment a few weeks ago, and the Doctor thought he was doing so well that he does not need to see him for another four months.

We are still doing a lot of different things to help Nick. He is taking several supplements, which among other things help his digestive system and strength. We are also considering another treatment in the summer, and also the possibility of more frequent physical therapy appointments. The fact that he is stable enough for us to consider adding more therapy is a blessing.

All and all, we are happy with his progress. It has been a great start to the year. Good luck to everyone in 2010!

2009 Year in Review

As I sit back & take a look at the ups & downs 2009 has brought us, I am reminded of the one constant in our lives that we are forever grateful for, our wonderful support system. Our family, friends, work & community have been alongside the highs & lows in 2009.

December was a great month. Nicholas helped decorate the Christmas Tree, met with Santa, celebrated Christmas with his loved ones. I am not lying when I say, I had 4 loads of laundry just from the clothes this little guy received on Xmas. He is one loved & blessed little boy. For Christmas, my son bought me a star in his name, Always Mommy's Monkey. If you can only imagine the kleenex that was used when opening this gift up. He is such an amazingly beautiful little boy. The baby is also making different noises now & can definitely show you when he's not happy ); Nicholas has also been doing very well in his PT. He is holding his head up for periods of time, responding well & building up good muscle tone. The other day, he actually rolled over on his own. We were beyond ecstatic at this accomplishment he made. We know our son is a fighter & it's evident in his every day life.

November was spent enjoying Thanksgiving with the entire family & to make it even better, my sister & her family came up from NC. We also were able to carry on the tradition of cutting our xmas tree down. Afterwards, we stopped at our stomping grounds for a bite to eat & a cup of soup to warm ourselves up. We continued to see growth & strength in Nicholas. We also started working with an Alternative Health Care Doctor who is helping our son with his diet & nutritional needs. Right now, Nicholas is on natural supplements for his liver, heart, kidneys, digestive system, cells & brain. We are seeing good improvements here & are hopeful that this is just another piece to our puzzle in healing our son. Our family hosted another fundraiser at Barrister House & we had another amazing turnout with over 400 people stopping by.

In October, we made the decision to have a stem cell treatment for the baby. The majority of our family traveled down with us for the 2 day stay. We all prayed that our son would see some improvement in his life from this treatment. We spent several months researching this alternative treatment & made the decision in late September to head down. We also had a lot of fun stopping by a few neighbor's houses on Halloween. I must admit, our son looked like the cutest Monkey I had ever seen. We also hosted our first fundraiser at Ikes where over 300 people came by to support our son. We are truly blessed to be surrounded by so many people who love us. Our family & friends helped put the fundraiser together & raised monies to help with our Hyberbaric Oxygen treatments & medical bills. In addition to all of this, we were also interviewed by our local news station. Rhonda Walker, an anchor on Channel 4, came over to interview our family. We thank her for providing our family with a forum to reach out to so many people who are not aware of Mitochondrial Disorders & more specifically to our son's condition, Leigh's Disease.

August was a very scary time for us. We had to rush our son to the hospital where he stayed for 13 days. He underwent several tests & procedures but stayed strong & fought throughout it all. After we brought him home, we spent a few more trips to the ER when the baby was seizing & was having troubles breathing. We made the decision to pursue Pallative Care through St John's Hospital. We have an amazing team of nurses, doctors & therapists. These people love our son & have built a life within our crazy world.

We spent the summer months celebrating birthdays of many loved ones, Fourth of July bbq's & celebrated Mothers & Fathers Day. We had good times throughout the summer watching our son grow & develop (: We also had fun in the late winter/spring celebrating my nephew & dad's birthdays. Monkey attended his first St Patty's Day party at his cousin Rachel's house. We had so much fun with the babies & family we were surrounded by. My sister came up with my nephew in March & we had a great time together.

February, is by far, the best month I've ever had. Though I was off of work & bed ridden for a few weeks leading up to Nick's birth, we were eager to meet this little man whose life was growing inside of me. On Saturday, February21st, the most amazing beautiful angel was born, Nicholas James. From the moment I laid my eyes on him, I fell in love so deeply. A love that I honestly cannot put into words. I have never felt a love this way before.

We have had our ups & downs in 2009. But what I'm grateful for is too long to list. But just to name a few, I'm grateful for my son, my marriage, my family, my friends, my health, my home, my job, my animals, peace in my heart & a stronger appreciation for man above. Because without him, my son would not be here. I choose to focus on the blessings I have in my life. Our lives are completely changed but the one thing that has stood the test of time, is the love of our amazing family. Without their support, we would be lost. Though 2009 is coming to an end, I am hopeful that 2010 will bring us forward progress, health & prosperity. I want to thank all of our loved ones for an amazing year, for the support given, for the sacrifices you've made to help us continue this fight for our beautiful son. God Bless all of you & here's to a Happy New Year!!

Merry Christmas!

Merry Christmas to everyone!

As everyone knows, we go as Nicky goes, and he is doing great!

It has been a busy holiday season for Mr. Nick. First, he helped us cut down the Christmas tree. Next, he helped us with the Christmas lights, which I must say is our best display yet!

Nicky visited Santa this week, and got an adorable picture with him. We dressed the little guy in an Elf outfit!

He has also already opened his first couple gifts! His first gift was from his Physical Therapist, Sussanne.

Speaking of therapy, Nicky has really gained a lot of strength the past few weeks, and his therapist is thrilled! He has muscle tone where he has not in the bast, and he is really holding his head up great!

Just last night, we had a great surprise. Nicky rolled over! Yep, from his little tummy to his back, all by him self, he rolled over! Those that are very close to Nicky, know that this is an amazing accomplishment, and we are proud of him!

Nicky also had an EEG this week, and although there is still a lot of potential for seizures, he did not have a seizure during the exam.

Today, we are going to church, and we're excited to see if Nicky "talks" to the Priest again! Then it is off to family for the next few days. This little boy is going to have presents piled all around him, we can't wait to help him unwrap them!

Well, I wish everyone the best this holiday season. Merry Christmas and Happy Holidays to you and yours!

Love,

Nick, Jenn, and Lil' Nicky

Lil Nicky

Slowly, but surely, Nicky's first tooth is breaking through! We can just about see it. It is taking a LONG time! Poor little guy, we can tell it is really bothering him. I swear he is on the verge of crying at times! He feels much better when we apply his baby orajel...

Nurse Kim stopped by today. We do not get to see her much because she works nights, but she is very special to us. Several months ago, she saved us an ambulance ride and emergency room visit on a terrifying Friday night. Nicky was suffering from clusters of seizures that would stop him from breathing for 10 seconds at a time. We thought we were going to have to perform CPR a couple times, and called both Walk With Me and 911 for help.

The ambulance and Nurse Kim arrived at the same time, but Kim was able to treat the seizures. This is important because the emergency room is very stressful for Nick, and it is just an awful place for him to spend the night. We have to do everything we can to conserve his energy. Kim followed up every day for the rest of the weekend, just to see how Nicky was feeling. She is a sweetie.

Kim was amazed by how much Nick has grown since she last saw him. I believe he was around 12 lbs at the time, and now he's almost 18 lbs! We also learned that his height is in the 25% percentile, which is pretty good considering he was not even on the charts a few months ago!

The past week has been a lot of fun.

We took Nicky to Church last Saturday. This is the first time he saw Monsiniour Mike since the baptism. Every time Monsiniour Mike would speak, or chant, Nicky would talk back! I think he enjoyed the acoustics in the church. Someone commented on Jenn's facebook page that Nicky was "talking to God". I like the thought of that a lot.

On Sunday, Uncle Jimmy treated the family to Christmas dinner at the Detroit Golf Club. It was excellent. Nicky is a big shot already, hangin' out with his God Father at "the club".

Everyone is noticing a lot of good things about Nicky. Jen and I are noticing good things too. He seems to have more energy, and is making more of an effort to hold his head up. He also seems to be looking at things a lot more, especially the Christmas tree. We may just turn in to those people that keep the lights up all year!

We are grateful for right now, and happy, that we are able to enjoy our baby with out the paranoia of dangerous seizures or emergency room trips or breathing problems. I am knocking on wood as I type, and will say a prayer tonight as I do every night, that things will keep moving forward.

I am so proud of my baby boy. So resilient. He is a Torpey, and he is strong!

God bless.

Love, Daddy