Medical & developmental update

So what has been going on with Violet?

In September we had a round of routine appointment that went well.  We have regular 60 to year follow ups.  We also had a consult with the developmental pediatrician.  Who referred us for a sleep study to help get some answers for Violets sleep issues.  The eye doctor also made the recommendation for Violet to go to UW Health in Madison to get a more intensive eye exam, VEP.  This will help us have a better understanding of how Violets brain processes what she sees.

Violet recently has some struggles with an infection in her belly that we are finally over.  It lead to a lot of abdominal pain and discomfort resulting in a very irritable girl and even more sleepless nights.

Violet underwent her sleep study this past Monday.  As much as I’d prefer not to, we will started Violet on a new medication to help her relax (this will replace the previously given Benadryl and pain meds) and then have increased her med that we used to help her sty asleep. So far we are 2 for 2 in sleeping through the night.  Let me tell you it is amazing what some sleep with do for a mama!  Violet has been diagnosed with mild sleep apnea which we will be seeing ENT for to see if she would benefit from having her tonsils and adenoids removed.  I am not really interested in going through the process of another surgery but I also want to make sure that Violet is in the best health and has the best options for sleep and health.

Violet has started school this fall also.  She has been making some amazing gains developmental gains.  She is starting to walk more in her gait trainer, she is interacting more and making choices.  Recently when in the gait trainer a consultant we have working with Violet & the EC (early childhood) staff asked if they always opened the door for Violet to walk through and they said, yes.  Heidi asked what would happen if they shut the door, if Violet would react.  React she did from the story I heard.  Apparently she got quite mad until they opened the door and then she walked through it.  I LOVE IT!!!!  Violets response to this is HUGE!!!  She is also responding to people who she sees on a regular basis and “hides” when she doesn’t want to do what you are suggesting.

Violet is growing like a weed and is such a funny little girl.  She is getting a little sad the weather is changing and it ‘s getting cooler outside and she will not be able to spend as much time outside as she has.  Someday my plan is to build a sunroom for her that is surrounded by windows giving her the ability to “feel” like she is outside even when we are inside and somehow have it always nice and warm for her so she can enjoy being out side all year long.

She is looking forward to getting her new bed that way when she plays in her bed after s wakes she can fit and not get stuck.

I think that’s the quick update for now.  I’ll do my best to update sooner. Life has just been crazy and so often I update this in my head but never really get it on the computer.


Thank You

                   Thank you

Wow! I can’t not believe it is September already and the months of preparation and event for the Race for Violet 5K Family Run/Walk are behind us. The dream of the 5K was an idea of my friend April and mine; we wanted to do something active and family friendly. Violet loves to be outside and we certainly couldn’t have asked for a better day for the event! We want to thank you so much for your support for this event and for this special little girl.

The benefit was a huge success and it was because of local people and companies, like you, that made all of this possible. To see the outpouring of love and support from the community, from both friends and strangers alike, for our family is again overwhelming, for lack of better words. We are so blessed to live in the community we do where people come together selflessly to provide for our child.

We all know that children grow too fast and life is no different for Violet, to think she is almost 4 years old at times I am blown away to think of all the things she has been through. She started preschool last January and continues with more school therapies this year. Stevens Point has an amazing program for special needs children and we are so blessed!

So what is in store for Violet in the next year? Violet will be getting a new bed. A bigger bed that is safer for her. Now that she is getting bigger her crib is getting far too small and as she rolls around in her bed her limbs will get out of the railings and when she ends up the short way she currently is length for length and her face is getting squished. It’s quite the sight! Her bedroom is also getting a face lift and we will be installing countertop and cabinets and getting a bigger changing pad and creating a better changing station for her since she currently still used the baby changing table we have had for her. Another place that when stretches out she is outgrowing, again, quite the site!   But this little girl never gets upset, she giggles about these situations she gets herself into! The sense of humor she has will make anyone laugh! In addition to the bedroom face lift we will also be installing a swing and a jumper for her in the house to add different there therapeutic stimulation at home.

Again I want to reiterate that Thank You never seems to be enough. The amount of love and support that continues to be outpoured for Violet is so overwhelming. We are blessed to know that while insurance does cover so many things there are still times that funding and insurance don’t meet the needs of a special needs child and we are blessed to know that we have support and a system in place to manage a comfortable life for Violet giving her the tools she needs to be successful.

Thank you,         

                                  The Family of Violet Thompson


Time flies / 5K

napping on mama

napping on mama


I can’t believe it is already July!  Time sure has flown!  I feel like it was yesterday that I was pregnant and we were just starting to realize what life would be like to 2 children.  Then with the birth of Violet we had to make the normal adjustments and even more with her needs and illnesses that we faced.  But here we are 3 years later, with a little girl who is amazing!

God has certainly blessed me with 2 amazing daughters, Grace who has a heart for others.  Who is so loving and tender, truly the best big sister to Violet ever imaginable!  And of course Violet, the start – with a smile that will brighten any day and the most contagious giggle you will every hear.

While no one’s life is easy being a mom to a special needs child is no exception.  This week I was sitting at work and I got one of “those” calls. Violet was incredibly irritable and wasn’t technically feverish but for those close to Violet, anything above normal is cause for concern.  My little sweet pea has been pretty healthy for a while and I suppose it was time…

She has battled an ulcer around her feeding tube off and on for a while and Monday night when I went to change the bandage it was really bad and red and made me concerned, but I’ve seen it before so I knew what to do and decided I’d keep an eye on it, however I started to panic a little with the new symptoms, what if it was something more?  What if it was infected?  I contacted our pediatrician and our GI doctor and we decided we needed to head to the ER.  All the testing could be done and the results back a lot faster than if we went to the On Call doctor.  After sitting in the ER for nearly 5 hours, we had answers.  Violet had a UTI.  What?!?  I know her UTI signs.  I didn’t catch this one.  But the good news?  It’s treatable! Even better…it’s treatable at home!

I am so grateful for the attentive, loving caregivers who know Violet’s signs just as much as I do.  I can rest every day when she is at daycare knowing, they know what to do and what her change in behavior means.




As time flies, I can’t believe the 5K is just around the corner!  This was something my dear friend and I have been talking about putting together for over a year now.  I can’t believe we are on the home stretch to get this done and ready!

There are so many wonderful women on the team helping put everything together.  Questions arise as to how to be helpful, we still need items for the silent auction as well as the team of volunteers that are needed to make the event a success.  If you have the morning free but would prefer not to walk / run we need volunteers through out the course as well!

There is limited time to order your tshirt with the registration so register early for the event!

I feel so blessed to have a wonderful group of family, friends and strangers who love and support my little girl as much as I do.

Many wonder what Violet needs help with and why we are doing the fundraiser.  As many of you have seen Violet in the gait trainer that is definately a huge item on the list as well as transportation cost for traveling to appts and the van.  Violet is also getting to big for her crib so I am going to be looking into getting her a special bed for special needs.  I’ve heard insurance will assist in some of the cost of the bed.  Those are the bigger items.

Thank you all for your continued love and support of my sweet baby girl!  “Thank you” never seems to be enough….



Pretty Girl


“Minor things”

Technically it’s still summer and we have had our first bout with the cold season.  Violet started it and ended up being diagnosed with pneumonia.  Grace got it and ended up with a sinus infection and now I got it.

The funny thing for me though is treating pneumonia at home is a minor thing.  I ran into someone at the park and she asked how Violet was doing and I said pretty good.  We have had a few minor things but pretty good.  Now Violet’s sleep habits are horrible and that comes with her brain condition so to me when she gets sick and she sleeps even worse, I guess I don’t think too much of it.  But with the pneumonia she would not settle down unless she was being held.  This was difficult.  I had posted something on facebook about how the pneumonia was kicking me in the butt and the same friend I had ran into at the park was confused because I had said that we were ok.  Please keep in mind, pneumonia being treated at home vs being hospitalized…is such a minor thing in all that we have faced.  I had to laugh…yeah, absolutely, more sleep deprivation, a somewhat serious illness and that is just minor for me…I can see how that is a big deal in others worlds.  So I guess I need to think about how I approach the “how is she doing” questions…. :)

She also has been suffering from a wound by her gtube sight which currently is healed but we will see for how long.  I received her longer button yesterday so after bath today will change that and hopefully if we can keep her cushioned we can keep this sore from coming back.

She is completely over the illness now and is back to her sassy little 2 year old self.  I forgot how tiring it is to change a toddler diaper.  Violet has discovered that it is a LOT of fun to roll around while getting her diaper changed and dressed.  I am exhausted at the end of all that!

September marks another busy month for us as we see almost all of our specialist in Marshfield in a 2 day period as well as our normal therapy schedule.  I am so grateful for an employer and coworkers who understand my need to take care of my child and all that Violet needs.  I couldn’t ask for a better group of ladies!



I was going through some clothes of Grace’s last night to see what we could use for Violet and I ran across an outfit that my mom had gotten for them.  The girls had matching outfits.  Grace’s was 24 months & I can’t be for certain but I think Vi’s was somewhere between 0-6 months.  Wow!  Time has flown!  The girls have grown so much!!! it’s hard to think that Vi is in 24 month clothing and Grace is in 5T, Where did all that time go?  When did these girls get so big? So hard to imagine!

What’s been going on with Violet?  Not too much, so far (knocking on wood as I type) 2014 has been pretty healthy year.  She got her 2nd set of ear tubes & they have been working amazingly well, Thank you Dr Stone @ MFC!  With the first set of tubes we didn’t have any drainage…as a matter of fact, I don’t even think we had any ear infections but they ended up getting plugged and moved so we had to take them out but these ones are already showing how much better they are.  I picked Violet up for therapy a couple weeks ago and noticed that she had some nasty drainage from her ear, brought her to the doc and sure enough…infected.  But the best part was, she wasn’t showing signs of an infection like normal so the tubes clearly did what they were supposed to do & no oral antibiotics!!! 

Violet did end up getting some weird respiratory virus that lingered forever and lead to a chest xray which showed some questionable area on her xray leading us to an early cardiology visit and echo. Luckily this was all okay and we are free from cardiology for another year. So until the next round of appointments or anything exciting happens.

Stay tuned for 2014 Benefit info!

2014 update

Where to begin? 2014 has come in with a bang.

Overwhelmed by all of the yearly or 6 month recheck appointments Violet got her second set of ear tubes since she continued to have ear infections after her 1st set came out. All in all that seems much better. Praise the Lord!

All of her annual appointments went very good. Honestly, there is nothing too exciting to report.

We were given some sad news last month and Violet’s favorite Occupational Therapist left our county and we started outpatient OT also. We are working with someone familiar at least. Linda is one of our NICU therapist.

Violet is doing well. Everything is on Violet’s terms of course! But occasionally she will stand and we even get her to take some guided steps, she can drink water with a big girl cup! We are working on getting her gait trainer. The lovely insurance completely denied the stander so we are moving on since she is doing alright.

We got a new sensory toy for her, a visually impaired toy. So far, she has not liked it, but I continue to give it a try.

Hearing aids & glasses: Well, you know, when Violet wants to, Violet does. Lately she has not been a huge fan of either of these. Not sure why, but that is what we are going through there.

Summer starts a new round of appointments, I need to decide whether or not I want to keep a 4 month appointment with physical medicine or push it off to a longer day with more appointments in early fall. I dread going over for 1-2 appointments. As stressful as it seems it’s almost easier to have a full schedule.

I will update more when the time comes.