Ankle pain is gone

Well, as much as we hated to have to go back again, it seems it helped a lot.  Dr. Paley saw where the nerve had been pinched and he "decompressed" it.  The pain went away almost immediately, so that is something to be very happy about. Lydia is doing much better.  She still has little movement in her foot though.  Dr. Paley said it can take a long time to recover, and that they usually do, but I am somewhat skeptical.  I believe her nerve is damaged and will never completely recover.  Hopefully it will recover enough to not be a problem.  We knew from the beginning from Paley and other parents that there are always some complications in these processes, and I guess this is hers. Given the alternative of amputation, maybe this isn't so bad :)

Nerve Decompression Surgery

Lydia has been very uncomfortable and in pain for many weeks now. She feels "pins and needles" as if her foot is asleep. But this like 100 times worse, to the point of being unbearable.  The surgeon says it's because the nerve was damaged during or after the surgery, or it's being pinched inside by something.  So, here we are again in surgery.  :(  Today they will open it up and release the pressure on her nerve which will hopefully ease her discomfort and we hope she will regain movement in her foot which up to now has been minimal.  I hate the idea of putting her through ANOTHER surgery, but there seems little choice.  Tim.

Bad Summer.

Sorry for being negative! I took Lydia to see the doctor today because of unbearable ear pain. She has an infection and possible strep throat. While we were there we had the opportunity to check her weight using the accurate scales. Her pre-op weight on the same scales on June 16th was 33 1/2 lbs. Today, July 26th, it was 28 3/4 lbs. She has lost nearly 5lbs. She looks nothing like her identical twin, Eliza.
Tim and I reached an all time low, last weekend as we watched her reject one too many small meals and we made the decision not to give her the strong pain medicine that she needs for the nerve episodes. We figured that the "not eating" was becoming more worrisome than the distress and pain of the pins and needles.
We have the number of an acupuncturist and we are going to give him a try. Nothing to lose there. Meanwhile she is on cyproheptadine (as of today) to increase her appetite, Neurontin- for her nerves, antibiotics for her ear/throat infection, and then just the mild motrin/tylanol for the nerve pain.....oh and as much food/drinks as she will let me give her, which up to now has been minimal.
I am a wreck!

Back Home

Well, we're back! Again, it has been an emotional roller coaster ride. Dr Paley saw her the morning we flew home just to see if we did need to cancel our flight and stay for another operation. He said that what had happened was very uncommon. And he figured that her loss of sensation was caused by the tourniquet which they put on her to stop the blood flow so that he can do all his surgical artistry. There are parts of her foot that have gone to sleep and the pins and needles sensations that she experiences as the nerves try and wake up again, are incredibly strong and send her reeling and thrashing around. Dr Paley said it could take weeks for her to recover from this. So she is on the strong Roxicet medicine and now a new medicine for her nerves, the result being that her appetite is depleted and she is a little dizzy. During this trip Lydia watched one of my favorite children's films called "Pollyanna". I bought it for her and Eliza, on their birthday and so Lydia watched it again and again. So being inspired by this wonderful story, I am now going to play the glad game and say....I am glad we are home, I am glad that Lydia will improve, I am glad that we are lucky to be able to have the amazing Dr Paley as Lydia's surgeon, I am so glad that Phyllis came with us to help out (She is amazing) and I am glad for all the love we recieve from family and friends. Thank you, thank you.

AN UPDATE FROM GRANDMA PHYLLIS (Chrissie has gone to bed)

Liddie has progressed this week just as the doctor thought she would; she left the hospital on Saturday afternoon. We came directly to Quantum House (it's just like a Ronald McDonald House) on the same campus as St. Mary's Childrens Hospital here in West Palm Beach. You can see on the photos the bandaged leg and the brace she has to wear when she's in the wheelchair. The sponge between her legs has to be kept in place when she's in bed. She is such a trooper, and a brave little girl.

She's had an ongoing fever off and on since Sat. evening. It's better today, and was only mild this afternoon. We were able to give her a sponge bath and wash her hair tonight - she had her favorite strawberry ice cream and went to sleep feeling the best she has.

We'll be going over to the hospital Monday morning early to remove the bandages, and then they will put a cast from just below the knee and around the foot. She wants a "red' cast since that is her favorite color - if they have it! Of course, everyone loves her at the hospital and I'm sure they'll try to give it to her!

I'm so glad I was able to be here, and help out. It's taken both of us to lift her sometimes, and she has kept us hopping!

All my love to everyone; thanks for all the cards, best wishes, and love you've given Liddie. Good Night, Eliza -Liddie misses you!

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Hip Surgery Next Week!

Lydia has a mild case of congenital hip dysplasia, a condition related to her Fibula Hemimelia. We knew from early on that at some point she would need a pelvic osteotomy (hip surgery) to correct it. In a way this is a preventative measure; it will prevent a possible hip dislocation later on in life. This is critical to maintaining mobility, since people who have hip dislocations often suffer permanent disability of some level as a result. This is especially important for a child undergoing leg lengthening, since it adds pressure to the hip. The research I have done and testimonials from other parents indicate these procedures are *very* successful and rarely are there complications.  So the time has come, she and her Mom are off to Florida tomorrow, for surgery on June 22nd. I will stay at home with Eliza this time.

The surgeon, Dr. Paley (truly the best of the best!), plans the following procedures:
- Dega Pelvic Osteotomy
- Reduction of hip subluxation
- Ligamentum Teres reconstruction

Stay tuned for more news!

- Tim

The Schroeders Rock!