Dear Family and Friends,
Lexxi had her 2nd big surgery to remove her “crown” on Wednesday November 13th. We had a lot of trouble with the crown and ended up in an emergency situation. So it need to be removed. As a result the surgeons went back into the same incision and “plated” the bone on the forehead open. Her immediate recovery was amazing and remarkable, however her browline has not “stuck” it has tilted or “retracted” or….”gone back up”. Yesterday we met with her plastic and neurosurgeons who decided to just “wait and see”. They do not feel that it is best to go back a third time at this time. They know she will need another surgery but timing is everything and what we really need is for bone to grow in so that they have “more to work with” (another year or two) As a person who likes to be “in control” this is so difficult. I just want her to have her “final surgery” and be done. God has another plan…
Meanwhile Alexxa had a VSD (hole in her heart which closed on its own) and PDA which is still open. This is now causing her Left Atrium to be enlarged (stretched) not a good thing. She wakes up with blue tinged hands and feet which could be from the circulation. Left untreated the doc says her Ventricle will eventually enlarge and then excess blood could back up in her lungs not being able to handle her blood capacity. Therefore in the next 5 weeks to 3 months she will be going to Sick Kids in Toronto to have this vessel closed. This is a heart surgery through the femoral artery in the groin guided by ultrasound and involves catheterization up to the heart and then placing a titanium device over the vessel that will stay there for life to block the ability for this vessel to leak. There are of course risks associated with this with blood clotting ect.
Yesterday at our appointment we also discovered that she has a couple of screws that are trying to pop through her forehead skin. So I got a call this morning and she is going back to the operating room next Wednesday to have these screws removed. This is a minor procedure in the big scope of things but still involves anesthesia and the logistics of surgery.
Paul and I are coping alright but are feeling weary and tired emotionally. It just doesn’t seem to end. At times I feel overwhelmed with sadness but then remember how grateful I am for all your prayers and all God has done this far. Please continue to pray for us as we continue on this challenging journey!
On another note we are so happy and excited that Lexxi took her first steps independently last Saturday February 1st. Its been a long time waiting for this and we are so exstatic that she is making physical progress. She remains a happy little thing almost ALL of the time. Livia has recovered perfectly from having her tonsils and adenoids out in November. It has made the world of difference in her life with being able to eat and sleep much better. She is truly doing amazing.
I will do my very best to keep you all posted as we continue along the bumpy road in this journey. Lexxi’s surgery to remove the screws is at 10.30 next Wednesday February 12th. We are unsure if she will have to stay overnight or if she will be discharged same day. We have to “check in” to our resort at 830am.
Thanks in advance for all your continued support.
Nic, Paul, Livia and Lexxi lu lu
PS Please feel free to pass our update along to anyone who is interested in having our update.