Hello everyone!

I apologize for the delay in this update! I thought I had sent the draft I was working on back at the end of February but when I went to write another one today I noticed it was never sent!  So I'll include it below with the addition of the most recent update this week. 

February 25th-

Hello family and friends! We had the girls' follow up visit at the neurosurgeons office yesterday and it went great overall.  

We had been worrying quite a bit over the past few weeks about Molly since she started to have swelling and pain at her incision site once she returned back to school.  However we spoke over the phone a few times with the neuro-surgeon prior to the appt and he talked us through it.  He told us to closely monitor it and notify if it got much worse before the follow up.  Fortunately it didn't get any worse and we were able to wait until the appt.  He said that it is definitely NOT a cerebral spinal fluid leak and the swelling and pain was musculature in nature  and should hopefully go away in 1-2 months.  We were so very relieved! If it doesn't go away in that time frame we will follow up sooner than the 3 months we have setup now.

He shared how impressed he was with how well the girls did while in the hospital and during the recovery stages with their pain management and overall coping with the process.  The girls were pretty pleased to hear him say this :)  Their incisions both look excellent and are healing well with the exception of the swelling around Molly's.  At the follow-up in 3 more months he will then evaluate their progress/symptoms and determine if physical therapy for gross motor or strengthening is needed.  He also informed us that we need to wait 6 months for the spinal cord to regenerate but then will have both girls begin extensive pelvic floor therapy to try to improve their pelvic floor muscles for bladder/bowel issues.  There is a specialist PT in Omaha they recommend specifically for pediatric pelvic floor therapy and we had some of our friend/PT's confirm she's the best and worth the drive.  

The girls tried to talk him into letting them go to dance and recess earlier than their 6 week restrictions which he thought was quite cute but again reiterated the importance of following their restrictions for the full time until March 24th.  This time cannot come soon enough! Ross and I will be so glad to not worry so much and we we aren't constantly saying "Don't run!" "Don't jump!" "Don't _(basically any movement except for walking/standing/sitting)__". It can be tricky when we have wonderful and energetic friends that come to visit but the many crafts and activities everyone sent has been so helpful in keeping the kiddos busy and safe! For those of you who visited thank you so much for breaking up the monotony of less physical activity and brightening those days for our family!

Once we meet the March 24th deadline the girls will be able to go back to recess, PE, and all normal activities with monitoring and adapting activities obviously for pain if it occurs. They told us to expect some at that point due to the lack of physical activity initially but that it should be manageable. 

From then on the neuro-surgeon emphasized yet again that one of the most challenging aspects for parents and the girls will be the waiting to see if any of the symptoms are going to improve.  He stressed the importance of being patient over the next few years and managing expectations. But we are all hopeful and would love continued prayers for improvement for our girls symptoms and patience for our whole family during this time.  We are focused on managing the symptoms throughout this time and are grateful for great health professionals to guide us along the way. 

I know I said this would be our last update on the website but I will post one more after the girls restrictions are lifted and they return to activity for those who are wanting to stay informed.  Thank you to everyone who follows the girls' progress, love, prayers and support. It's challenging times like these when we are able to reflect on how blessed we are for our amazing family and friends that have supported all of us in so many different ways. We are so very grateful for all of you!

March 30th

Hello everyone! Hope everyone is enjoying the beginning of Spring!

So here is our little families final official website update, can't believe we are at this point. We are now at almost a week after their restrictions were lifted. At the beginning of the year this point in time seemed so very, very far away! 

Our girls continue to amaze us with their strength and resiliency through this process. Both of their incisions have healed and we are thankful to get back to baths and not washing hair in the sink lol. Molly unfortunately has had the biggest issue with back pain basically each evening and sometimes throughout the date at school since a week or so after the surgery.  Her incision fluctuates in swelling but is pretty consistent for the most part. We are keeping a close eye on it as it should really be gone in the next few weeks according to the doctor. Ice packs and now heating pads are a consistent part of this sweet girls routine. But she is happy to have been getting to know the school nurse and they have become good friends!

During the final weeks of restrictions the girls were great and focused on the positive aspects of limited restrictions like allowing for more sister and family play time in the evenings due to less activities we were traveling to, special one-on-one time with friends at school that would stay in with them during recess,  and getting to pick daily helpers to assist them with carrying heavy backpacks etc.  Their teachers, friends, and school have been great at providing accommodations as needed.  There has been a little bit of a transition at school this week with not having that bit of special attention ;) That's not to say there has not been tears, stress and frustrations on all of our parts that is for sure, but overall we got through it and no additional complications or appts have been needed so we consider that a win.

The first day of no restrictions the girls were SO excited (they had a countdown going for a LONG time). They woke up and the first thing they did was cartwheels and riding their bikes. We had some wonderful friends come from Omaha and a great get together at my parent's for Easter which was really fun. We tried to remind them to slow down and not overdue it but they have had a hard time stopping to rest which has resulted in some sore nights. They also had their first night of dance and tumbling Monday which was a lot as well (I have never cringed so much with each movement as I did at tumbling!) and the next day they both agreed they maybe should have listened to Mom and slowed down a bit.  Unfortunately they have had some level of pain each night since their restrictions have been lifted but this was anticipated and we are doing our best at helping them manage it at night as best as we can.  Luckily the pain is managed well for the most part during the day so school is going well. We are very honestly REALLY looking forward to when our little girls don't have the ongoing struggle with pain; it is so very heartbreaking as parents when you can't fix things or take away the pain right away. The girls both get a bit frustrated with the pain stating things like "I thought the surgery was going to fix this!" and expecting their symptoms to go away right away so we continue to be honest and upfront about the timeline and managing expectations.  It's definitely challenging to explain the medical complexities of spinal cord regeneration to  a 6 and 8 year old and for them to really understand it!

Although this journey has been challenging to say the least and is still ongoing as we wait for improvement we are so grateful for where our girls are at. And we are all full of hope and trust in God that they will make improvements that will dramatically impact their health, quality of life and future. I know I sound like a broken record but Ross and I are so genuinely grateful for all of you, your continued love, messages, prayers and support for our sweet girls (and both of us). And our girls have been shown in so many ways the overwhelming love they have from our amazing family and friends- you can tell they truly feel it in so many ways and it's really had an wonderful impact on them.  Even though we will not continue to update on this website (we will keep it up for a bit just in case) please don't hesitate to ask them how they are doing if you see them or if you want to know more about their progress in the future feel free to ask Ross or I anytime! 

Love to you all, Jenny, Ross, Madelyn and Molly