Overdue Update

It has been a long time since I have updated Ricki's blog.  The challenges of a chronic illness never go away but sometimes it is just nice to not think about it.  Ricki has some challenging mountains to climb in the coming weeks and we reconginze that we need the faith and prayers of all of our friends and family.  This doesn't have everything but gives you a bit of what Ricki has been through this past couple of months

August 3, 2018
We received word from the neurosurgeons that they want to do a biopsy on the aggressive brachial plexus tumor on Monday, She will have the neck surgery to remove the tumor in her c-1/c-2 Tuesday the 7th, and then she is scheduled for surgery to remove the brachial plexus tumor  the following week on the 15th.  

July 2. 2018

In the past month we have been to 17 different appointments for Ricki. Her legs continue to become week and totally go out on her. They began by lasting an hour but as the weeks have gone by she can't walk sometimes for up to 12 hours. It is breaking our heart. We have been to our neurosurgeon,neurologist,EMG specialist,psychologist, psychiatrist,urologist,physical therapist and occupational therapist. We have sent her images to our neurologist and neurosurgeon in Baltimore and still are trying to figure out her c-1 tumor. A t-12 tumor. A possible brachial plexus tumor regrowth, and the handful of tumors in her quada equine all of which could be We are scheduled for yet another MRI and another EMG to try to assist the doctors in putting the puzzle pieces together. 

June 15, 2018

I just have to brag sometimes....yesterday at Rickis EMG first they put these little patches on different nerves and shock her to see how the nerves respond. From that information they know where to focus and they get more information from how the muscles respond the the shock by putting a needle in the muscle and shock her again. As the neurologist was working on Ricki he was amazed at her strength. He said he had never seen a patient so STOIC ..I had to go home and look it up. The definition is a person who can endure pain or hardship without showing their feelings or complaining. He was telling us he had grown men covered in tattoos having this same test bawling and yet Ricki  was holding it together and occasionally cracking a joke. She told the nurse sarcastically if she could paint a picture of a perfect day this would definitely be  it.... It broke the intensity of a moment and made us all laugh. I know that it is her sweet faith in God and the many prayers in her behalf that help her endure what she does. I am so proud of her!  The heartbraching news however is that her left hand is becoming paralyzed.

June 4,2018

We met with neurosurgery today. Ricki is scheduled for surgery to remove a tumor at the C-1 level  in August. There are still puzzle pieces that we haven't got figured out and will be meeting with her neurologist to try to figure some more things out for our sweet Ricki. It's been awhile since we have seen Dr Bolllo and his staff but it was like seeing old friends we hadn't seen in a long time. We are grateful for such wonderful people to help us take care of our daughter.

May 28, 2018

They were unable to get the MRI crew to come in so it looks like we will be here another night with an MRI tomorrow. Ricki seemed to be walking ok this morning but when we attempted the stairs it became very difficult. Later in the morning both her legs went out completely again.... I keep hoping it will just go away but it doesn't appear it is. The highlight of the morning was a FaceTime call. Technology is the best! Nothing like brightening up your day with 3 smiling faces.

May 27, 2018

Ricki's legs have been giving out on her several times today. Oliver was sure his slobbery wet ball would make Ricki better but the Drs at Primary Childrens felt like they need to keep her for observation and get an MRI tomorrow. They have had some serious emergencies so we are waiting for them to get her admitted.. We are driving poor Ricki crazy with our old people humor.

The exciting Life with NF2

It has been 5 months since Ricki's surgery at Johns Hopkins. We feel so very blessed how quickly she has healed and continue to be humbled by the sweet love, support and many miracles we have experienced along the way.

Physical therapy when she got home was not her favorite but she recognized the value in it. She had an amazing therapist that kept her going even when it was hard.  She was released from therapy before Christmas because we had reached the limit of therapy the insurance would cover. She has come such a long way since this summer and we are so proud of her.  The extreme pain she was experiencing from the tumors by her heart and lung is pretty much gone.  She still has occasional days that she gets some sharp pains but the doctors said that would be a normal thing for her because of the nerves that were involved in the surgery. 

Another challenge Ricki has faced after surgery is the adjustment to her medications.  She was on a great deal before the surgery and they had been trying different things to manage her pain and then after the surgery it has been a challenge to find the right balance for her.

With the surgery we got off our schedule of Botox treatments that seemed to be helping Ricki's migraines.  They seemed to be getting worse with each month and we were finally able to get her in again for a treatment the end of January.  It took almost 3 treatments before we saw the improvements so I anticipate it will take a couple more to get her back on top of the migraines again.

In the meantime we try to manage them at home.  She had a really tough week not only with migraines but pain in her back and legs. We  knew we could at least get a migraine cocktail to break this cycle of migraines.  We normally go into the ER but decided we would try insta-care instead.  Instead of doing it through an IV they give shots.  They gave Ricki 2 of the 3 shots.  They had her leaning up against the bed.  She passed out and I was across the room and the nurse had a needle in her hand so Ricki face planted on the hard floor. We have been through a lot over the years but it doesn't make it any easier seeing your daughter fall then start twitching on the floor with blood running down the side of her face... She is going to be ok.  The migraine isn't so bad but she has a huge goose egg on her eyebrow and will have a good shiner for awhile.   

Some days my heart just aches for my sweet girl.  It is a moms job to take care of their children and help them when they need it.  Unfortunately with this rare disease there are just not a lot of solutions and not a lot of answers.   There are a lot of days that I feel helpless when she asks for some help and I look in her eyes and see the pain and there isn't anything I can do but sit by her. 

But, I always come back to how incredibly blessed we are.  Yes, life stinks sometimes but you have to taste the bitter to know the sweet.  You have to trust that God has a plan.  We have seen his hand in our lives. We have been strengthened and know we will continue to be strengthened.  We continue to have hope that someday there will be solutions and answers to the challenges that come with NF2.