Tuesday, August 5, 2014

Como Zoo



Today was a great day! Who hoo! We made it to the zoo and it couldn't have been better! Logan and Lauren were on their best behavior. The weather was just right. Logan was surprisingly calm even in the indoor exhibits that were hot and loud. So glad we have a big battery operated fan on his wheelchair. I have to say it makes me jealous! The kids saw a seal, huge polar bears, lions, giraffes, zebras and more. I think he liked the polar bears best! Lauren enjoyed a few rides at the park while Logan snoozed. Now we are home and ready for a nap. 

I am so thankful for days like this! Thank you to Cora and Cyndy for making it so easy for us. 




Monday, August 4, 2014

Will this ever be easy?

So I have wanted to write a blog post about Logan's Make a Wish party he had a couple weeks ago. I just haven't found the time to put my thoughts down. Part of it may be the dark heavy feelings that tend to creep in from time to time. Tonight I am so upset and honestly sick of what Logan's illness has taken from us and what it has put us through. Please don't think for one second that this reflects on how I feel about my son. His illness (or whatever you would call it) does not define him. He is a three year old living with disability. 

So tonight I am mad at the disability. I am once again very mad that we have to rely on others to care for our son. We have had a very hectic schedule with our nurses this summer. Between vacations, nurses leaving, a no show, and ill calls I am frustrated and exhausted. We have a great group of nurses that have bent over backwards. They have been through the ups and downs with us. Now as changes are happening, the replacements are just not fitting into place. We have almost one night shift every week that is not filled causing Joel or I to stay up all night.

I agonized when we had to request nurses schedules be changed to accommodate 24 hour care. We used to have 20 hour a day care which worked out pretty well but with Logan's increased need for monitoring and care we were allowed the 24/7 care. And boy we are so fortunate to have been given the hours. Now we are having to shuffle schedules and that affects more than just our family. This is people's livelihood. I hate that we have to be involved in it at all but unfortunately I have to be on top of the schedule otherwise shifts don't seemed to get filled.

As Logan's parents it is our job to care for him but is it fair that we have to stay up all night when the funds are there for a company to provide us with help. Logan requires frequent care at night that doesn't allow us to sleep. I am always thankful for my time with him but I feel more and more anger building and I don't want to start looking at him and seeing him as the problem. He can't help that some crazy degenerative disorder has taken over his body. Once again I am so mad at this whole situation and mad at what having to rely on others has done to me. 

I feel horrible for saying all this. There are so many families out there that don't have the resources we do. I sound like a spoiled brat complaining. 

I am a cranky wife and mother and a poor friend. I can't follow through on things and when I am home I get overwhelmed and shut down. I can't even pack my lunch without it stressing me out. Not to mention the other stressors that come along with parenting and marriage. We never seem to get ahead or catch a break. 

Ugh. As someone I know might say, I just vomited all over. She says that is what venting is! I don't feel any better but at least I have worked myself into enough of a tizzy that I am getting pretty tired. I have a five year old who is now awake complaining of a headache (it's 1:45am). She is so good at being sick. She just rolls with it and always tries to make it seem like she's not sick. Not sure why but she really puts on a good face! 

Hopefully she is better tomorrow because we are planning a day at the Como Zoo. I have wanted to take Logan all summer. Something always comes up when we either try and go out of town or when we try to plan something with him. Hopefully the stars align tomorrow. Also hoping he doesn't freak out too much. He is becoming increasingly sensitive to all sensory input these days. 

As always, thank you for reading and allowing me this space to write. Therapy is a lot more expensive than a blog! Hopefully I will have the Make a Wish blog up soon. Anyone want to help?! :)

Wednesday, July 2, 2014

Seizures

Since I last updated, Logan has seen his neurologist. He thinks Logan's seizure medication (Keppra) may have been causing agitation. Over the past couple of months we have been trying to treat his severe agitation. We started new medications and finally found a regimine that worked. It did make him sleepy but comfortable. His neurologist now has started having us taper off of Keppra and change to a new seizure medication (phenobarbital). We are on step two of the taper and have had the new med on board for at least two weeks. In the last three days he has had one big seizure a day. They are short lived but are increasing in frequency. We seemed to have good control for the past month. I have heard the time during a seizure medication change is hard and that more breakthrough seizures may occur. Hopefully they stay at the degree they are at right now and no more.

Otherwise Logan is doing great. I was the night nurse last weekend when he started down the path of illness. He had a fever and low oxygen levels. After starting his as needed medications he turned around quickly. Thank goodness. Tonight I am the night nurse again. We have some holes in the schedule for various reasons which is always stressful. It is hard to work all day, commute, and then have to stay up all night. I do have to say I enjoy the one on one time with him. It seems I have less and less of that these days. 

I'm praying he rests well tonight. He had a seizure a half hour ago and is pretty zonked now! I have to say, I LOOOOVE his bed. It is a hospital bed with side rails like a crib but no slats, just big panels. We can adjust him into all sorts of positions. When we put him into bed at night, he just melts. I also didn't realize how I would feel when we were able to let him sleep with a pillow. It helped bring some normalcy to his bed. Plus I feel better knowing he has a cushy place to land his head. 

Wish me luck tonight! I'm not the best night shift nurse but I am a pretty good mommy! I let Lauren watch Frozen tonight. I was in Logan's room giving some meds and she started to belt out the song "let it go". He woke up and looked around. The look on his face was priceless, a little confusion, curiosity, and maybe fear. It was hard to tell. I'm sure he is sick of being tortured with the songs! 

Now off to start the midnight feeding! Happy 4th of July to everyone. Stay safe out there and enjoy the holiday!

Rachel

P.S. Here are some photos from Fourth of July last year



Tuesday, June 24, 2014

Fun in the sun!

Lauren, Logan, nurse Cora and I had a great Monday this week. We went for a quick appointment to the nurse practitioner to have a rash/eye redness looked at and decided to then go for pizza, the splash pad, and ice cream. The weather was perfect and Logan enjoyed splashing in the water with Lauren. Lauren soaked Cora and Logan at one point and the laughter of us all felt great. It was such a blast to involve Logan. Lauren seemed to really enjoy the time with her brother. We ended the outing with strawberry ice cream for Logan and I and mint chocolate chip for Lauren. Logan may not be able to eat by mouth but we do sneak him tastes of his favorite ice cream flavor every once in a while! Happy Summer everyone!