Thursday, November 20, 2014

Winter has arrived

One of my most recent posts was an emotional one! I tend to do that! I build up the emotions and then let it all hang out in a blog post. The release does feel great but sometimes comes with regret. I know, it is silly to feel bad for being honest! 

Sometimes I feel like I go too far. Well, I'm sick of feeling that way. I have had the great fortune to be part of an amazing resilience program at work. I have learned some awesome techniques to manage stress at work and have also transferred that to my home life. I have been very intentional with my goals and have completed many of them. It feels great to shift my priorities! I plan to keep building on my successes and want to keep the momentum. It feels great to take control of my well being. 

Logan is doing well. Preschool has been going very well this year. The nurses say that he stays awake most of the time at school. I really enjoy seeing his artwork and hearing about his interactions with classmates and what's books are his current favorites. We had his wheelchair adjusted. Logan is 45lbs. He is a BIG boy! He is also on a diet. We have him on new formula that is made from real food. He did have an episode of vomit but since then no issues. We are going to stop advancing his volume as he is meeting enough calories. We don't need to push his tummy any further at this point. True aspiration could be a respiratory disaster for Logan. Best to stay conservative. 

Tomorrow we meet with his county case manager. It is time to discuss home and vehicle modification. It is very difficult to bathe him so a lift system and a new bath tub are needed. He is also quickly outgrowing his car seat. We may have to look at a lift on the van for his wheelchair. He would then stay in his chair and that would be anchored to the floor as we drive. I am a little nervous that our van is a year or two past the age limit of a van for MA to cover. 

These topics stress me out as I worry about the financial impact. I have been trying to put that aside until I know what can or cannot be done. Our house is tough being a multi level home but I think we have some good ideas and options to give him a home that accommodates his needs. 

I have to touch base with genetics soon. They were going to see if the National Institutes of Health's Undiagnosed Disease Clinic would be interested in his case. Honestly a diagnosis has not been high on my list of priorities. It would be nice but not completely necessary. We will see if the door is open or shut to that possibility. 

In the meantime we are in an early winter freeze here in Minnesota. The ground is already covered with snow and the temps are in the teens. The annual freeze in has already begun. I have a feeling Lauren is going to feel couped up one of these days. Thank goodness for swimming. She is doing great learning to hold her breathe under water and learning the basic strokes. I am amazed how the instructors can push the kids out to swim and they just do it! 

She is also a great student. She loves to learn and show off her talents. I enjoy homework time! She is such a sponge these days. So much of one that I may need to make a swear jar. Mommy has rubbed off on her a little bit! I have a feeling my bank account will deplete quickly if I don't clean up my act! 

Here are some recent photos. Hope you enjoy as much as we do in these simple moments? 

Tuesday, November 11, 2014

Puke and earache

We had a little hiccup with Logan tonight. He is on a new low calorie diet which involves a new formula. This new formula is made from real food but requires him to get larger volumes at a time. His nurses have been slowly increasing the volume every two days. Tonight he had a sneezing fit and vomited. This wouldn't be a big deal except that he had a procedure last spring called a Nissan Fundoplication that was done to prevent Logan from refluxing and vomiting so we could feed him into his stomach verses further into the GI track as we had been. 

The nurse caught it as it happened and suctioned most of it before it hopefully could have been aspirated into his lungs. Before Logan's trach, he had frequent hospitalizations due to aspiration pneumonia. We have worked very hard to prevent this post trach and have been successful. 

I will be in touch with GI tomorrow to see if we should slow down his feedings and allow his tummy more time to stretch. I'm praying that his tummy surgery remains as is and that he was just pushed a little too hard, too fast. Poor bubba! 

On a funny note, at least I think it's funny but I'm sure he is mortified...we are trialing new big boy diapers. He has outgrown the store bought sizes. The medical supply company sent out samples and it has been comical. You should see how big they are! His crotch is only so wide! It looks like a big lump between his legs. There is one type that will work ok. It's still bulky but we only get so many options. I wish they made better diapers for toddler/youth kiddos like Logan. Fun colors or logos would make it a little easier. It would be great if they looked a little more like underwear. I'm just sayin! 

I know my last post was pretty emotional. Thank you to all that commented, texted, and asked how things are going. This journey is a roller coaster ride! I appreciate when others take time out of their day to check in and pass on words of encouragement. You are all The Best!! 

Now I am putting my attention to miss Lauren as she battles an earache tonight. I lay next to her as she snores and dreams out loud. She has been up on and off a few times. I'm hoping the ear drops I snuck in do the trick! She truly is a trooper when it comes to being sick. She downplays everything and most of the time we don't realize she is sick until she has a raging fever or is puking. She is such a rock! 

Thursday, November 6, 2014

Things keep changing

I'm struggling to find the right words to begin this post. I have wanted to blog and I think about writing something every day but I don't. It is easier to think about it and make an excuse not to than to complete the task. I have a feeling I have been postponing as I am again in a period of unrest. 

Logan is fine. He has been sick a few times since September but nothing we couldn't manage. He is in preschool three days a week. Still, good things to report. 

But as he and our family proceed day by day I see my son declining. He hardly moves. He is distant. He is weak. His eyes do not sparkle. Even simple enjoyment of a favorite show or movie do nothing for him. He stares off into space. What he thinks about, I will never know. 

My gut says this is his degenerative disease is rearing it's ugly head. It could be the medications he is on, but I don't buy that. I feel like he is slipping away but so slowly that it is like torture. He is gaining weight and most people would praise that. I do not. He used to move so much and burn so many calories that we could barely get him to gain an ounce. Now he is overweight as he has little physical strength to burn the calories we give him. 

These days we have to give complete support to his body as he has no ability to hold up his head or control his extremities. I'm not saying that he doesn't move at all because he does. His hands writhe a little and he moves his feet. He will arch his back and throw his head back contorting his body. We think he does this when he is upset or can't swallow his oral secretions. Sometimes it looks like a seizure. Other than that, he lays there. 

It makes me sad. Is he enjoying life at all? Is he sad? Or does he even understand what is happening? 

What I do know is that he still responds to my voice and my comfort. He still snuggles with me and closes his eyes when I hold him close. When I kiss his face he sometimes winces like a little boy trying to say "stop kissing me mom"! He listens when I sing to him but I think he prefers his Grandma Cindy's singing better! His face is that of an angel and the feel of his skin is smooth as silk. 

I end this post here as I have run out of words to say other than, thank you a million times over to all of you who pray and send positive thoughts our way. I promise my next posts will be more exciting and fun!

Wednesday, October 22, 2014

Logan's 4th Birthday

Today we celebrated Logan's 4th birthday. It is Wednesday so our celebration was small (Joel, Lauren, myself, and Logan's nurse Cyndy). Lauren bought Logan a big writing tablet that he can play with. He does well with arts and crafts with our help and Lauren really enjoys showing him how to do it. 

We gave Logan his big birthday present last Saturday. I found a bean bag chair (actually made from foam) online. It came in a pretty small box but by the time it was opened it ended up being the size of a small love seat! So far we have found it useful though. It was made so that a person can sit up in it. My hope was to find something more like a chair so he could feel more included in family activities in the house. Right now we have a very plush mattress like area in the living room but it does not allow him to sit up. The other advantage of his new chair is that we can sit with him. Lauren, Logan and I all fit together which works great for reading books. Honestly Logan is impossible to shop for. Traditional toys don't work but with a little creativity we have seemed to find things that work. 

All evening Logan played possum. Whenever we tried to do something he fell asleep. I have a feeling he was pretty tuckered out from school today. He has been out of school for a handful of days while he was fighting a cold bug. We did finally get him to stay awake long enough to let us sing happy birthday. Lauren picked out cupcakes and we put candles in one and she helped him blow them out.

We spent the last part of the evening talking to family via FaceTime. It is always so fun to be able to share these moments over a video feed! And to end the night, I sat in his new chair and cuddled with him. He was out cold but I still reminisced about the day he was born...

It was a sunny day and not too cool. We went to the hospital on Sunday afternoon to be induced. We arrived around one in the afternoon. By the time we were checked in it was after 2:00pm before the pitocin (medication used to induce labor) had been started. I remember hanging out in the room thinking how hungry I was and wondering why I hadn't eaten more that morning. 

We were only a few days overdue but our OB was working that weekend so we decided to help things along knowing we had her there. She was also there to deliver Lauren (not a planned delivery date). During both pregnancies I only saw Dr. P or the nurse practitioner. I was too weirded out by having a handful of other doctors involved and potentially being part of intimate parts of my prenatal care. Yes, silly I know but I needed that trust and stability. 

Anyways back to the story. I continued telling Logan about the day he was born and don't forget he was snoozing. I didn't care! We went through the afternoon and early evening with the induction. My OB broke my water around 5pm as things were progressing well. I remember her leaving and the contractions coming like a tsunami. It was overwhelming to say the least. The nurse queued into this and called the anesesthesiologist to see about an epidural. Nope, not possible, they wanted me to have more IV fluids. I remember seeing her next to the bed squeezing the bag trying to get fluids in faster. At that moment I was gripping the side rail so hard I probably left permanent finger prints.

Looking back it was pretty dramatic! I lost all control and quickly had an overwhelming sense to push. Next thing I knew, the room was transformed, nurses were running around and were trying to find the OB. I remember rolling to my back and seeing about three nurses at my feet and I was pushing. No doctor yet! There was no stopping it. Logan was coming and that was the way it was going to be. I even remember the anesthesiologist walking in shortly before Logan was born to see about an epidural. He is lucky I was too busy at the moment or I may have rung his neck.

Next thing I knew, Dr. P was there and ten minutes later so was Logan! It is amazing how much faster you get a baby out when you feel every bit of it! Logan didn't cry when he came out and I freaked out. At some point he did cry and it was a huge relief. His agar scores were fine but I was so worried that he didn't cry. Looking back I wonder if that was the first moment I recognized something was different with Logan. His nose was smushed! I remember Joel telling me that! It made us all laugh. Joel is so good at bringing humor to a stressful situation. 

I remember his first bath and sitting with him alone in the room that night. I held him to my chest. He was so tiny but had incredibly long fingers and toes. I will never forget him up against my chest in that moment and him pushing his feet off of my thigh and holding his head off my shoulder. The nurse even mentioned how strong he was. 

Well over the last four years we have seen that physical strength deteriorate. It is heart breaking to think back on the way he once was but it helps remind me why he is still here with us today. His determination is not just physical but also mental. He is stubborn and has always found ways to make sure he is heard. Whether it is him smacking someone in the face or pulling a full on panic attack, Logan gets his point across. He is so very amazing. I can't say enough how proud we are of him. He overcomes so much every day. 

Logan, happy birthday! You are my angel on earth. I am so lucky to be your mom and to have been able to spend another fabulous year with you. I can't wait to see where this one takes us!