Violet scared me several months ago and I woke up to the sound of her gurgling on her own vomit in the middle of the night. I quickly ran into her room and turned her on her side.
I spoke with the pediatrician the following day about it and Violet seemed ok. We watched her and 2 days later she developed a fever on top of the cough she had prior to the incident. So off to the ER went went. First diagnosis of aspiration pneumonia. We got through it with flying colors and she’s been healthy since. Until recently.
Violet had just been really off. Her demeanor was not the same at child care and I’m so thankful they andre attentive to her. We continued to monitor her at home and check in with child care and she was really the most fussy at child care. Brought her to the doctor, nothing. Okay, no big deal. Just a lot of sass. Which for Violet is no big surprise. This girl has spunk! A week or so goes by, still not herself. So we bring her in again, checked her ears, ran a urine to see if it was her normal stuff. Everything checked out okay. Hmm, over the course for the weekend she get worse at home but not enough to bring her to the ER. I make an appointment with the pediatrician on Monday and just incase she wants a chest xray just to make sure.
I’m so grateful for an amazing doctor who knows Violet and trusts my concern and is thorough to run the appropriate test and the appropriate times. The xray doesn’t look horrible let so we leave, I get a call from the doctor, the radiologist read the xray. Aspiration pneumonia #2.
I’ve known long before our first diagnosis that some kiddos like Violet can face things like this. While Violet does suffer from reflux, it isn’t as bad as other kiddos but it can be critical for us.
So 2 diagnosis of aspiration pneumonia is a short period of time, so where do we go from here? In January Violet will under go some testing to see if she is swallowing right and see if everything is okay with her upper GI. There are many scenarios that can come out of the results and some of them I just refuse to think about. So, for now, I will continue to pray and trust God to give me the strength to make the right decisions for my sweet angel.
Violet had her surgery at the end of January. We spent one night in the ICU to make sure her pain stayed until control she could tolerate her feedings and she didn’t have any bleeding post operatively.
Violet did surprisingly well, although she wanted to be held and kept upright so we came home Friday.
She started doing a lot of coughing Saturday and Sunday. By Monday she was starting to cough out some secretions. Throughout the weekend and even on Monday I was calling the surgeons to make sure everything was still normal. Violet also wasn’t tolerating her feeds.
I decided to do a slow continuous feed. Stopping formula and doing pedialyte and water.
Wednesday we went into the doctor and Violet had pneumonia.
Once on medication she recovered very well from the surgery and has been doing well since.
Recently she started suffering from her seasonal allergies so I am trying to combat that right now.
Violet will be having her tonsils and adenoids removed on the 21st. What’s a simple procedure for most kids brings me anxiety. We will be admitted to the ICU post operatively.
I have some serious anxiety about how she will be post op. How will we manage pain? How will we know if she is in pain? What if she starts bleeding? What about when she gets home?
From my previous work history I used to get kids on the short stay floor after a simple T&A ( tonsil and adenoidectomy) and we encourage soft, cold food and well, Violet won’t be able to do that…so…how does this work?
I’m so grateful we have a conservative surgeon who knows Violet. Knows that Violet doesn’t play by any rules and needs to be treated than other children.
But for now, I will embrace Violets snuggles and giggles and hope that all goes better than planned.
Where has time gone? How is it this little girl as turned 4 already?
She never seems to amaze me. At 4. What does she love? Dancing. Singing. Snuggles. Baby dolls of course. She got this one for her birthday and instantly fell in love! Now she has her baby, Gracella (her big sister might have named it for her). But just like every little girl, she loves her “Big” her family, her caregivers and her baby doll.
We were discussing how long we will call Violet, “Baby Violet”…well…probably forever…lol. Her characteristics are not of a baby anymore. She is becoming a little girl. Looks and interests.
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.
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.