Saturday, October 3, 2009

Spina Bifida Clinic & A Little Insight

Life has been REALLY challenging this past week, but we have moved forward! I must say, no matter how much crud the enemy throws at us, God always prevails, and carries us through it! For that I am eternally thankful!

We headed up to Spina Bifida Clinic at UCSF yesterday for Nathaniel's regular check ups and to discuss some issues that have been plaguing him. For reasons that I will explain in a minute, the kids and I headed up alone. This is the first time in a LONG time that I have made that LONG journey with just the kids and no other adult. Actually, it's the first time in a long time that I took Audrey too! I usually arrange care for her with family and friends at home, but that wasn't a good choice this time. I was so concerned about the whole trip.

I have to say that all of my prayers were answered and more on this trip!

My kids were P.E.R.F.E.C.T. They did so great one the 4 1/2 hour trip up there, watched movies, played games, sang songs to mommy and giggled A LOT (which my heart TOTALLY needed). At UCSF they used their great manners, had their listening ears on (for the most part) and didn't squabble or fight! Audrey was really concerned about all the appointments; she isn't used to seeing SO MANY doctors and having so many tests one right after the next. It's the first time that she has really observed this since she has matured enough to kind of know what is going on. But she asked her questions well and was very empathetic to her brother (imagine that, my empathy queen being empathetic, but it was still good to see!) Then we piled back into the car and headed home. This is usually melt down time for Nathaniel, but he did well. They sand songs for a while, then I turned a movie on for them (since traffic was really heavy). They ate a ton, and even slept some. I was pretty tired, but traffic was heavy all the way home, which was probably a blessing because I had to stay focused and didn't get too heavy eyed!

One of the big issues every time we go to clinic in the past few years has been bowel and bladder surgery to get Nathaniel dry and regulated. I have taken this to the Lord SO MANY times, and NEVER felt His peace about going ahead with it, so it has been a point of contention with the Urology staff and myself.

Nathaniel is catheterized every 2 1/2 to 3 hours to empty his bladder, but still leaks through, so he also wears a diaper or shield. He is a VERY active little guy, and none of the non invasive procedures have worked for him. At this point (and all the way up to this point) it has been a social issue more than a medical issue. Nathaniel has done AWESOME at keeping his bladder and kidneys healthy (ok, maybe this is mostly us keeping him healthy but hey ..) So the big issue has been that we have a little boy who is now 9 and still in diapers.... but you know what? He doesn't CARE! He deals with it fine at school. He is on a pretty regular BM routine. And it's just a deal able part of life to him. So I have been reluctant to do anything that is irreversible and very invasive about it until he is older and can have more of a say himself. I figure it's HIS body and he will have to deal with the consequences of these surgeries for the rest of his life, why not let him have a say when he is mature enough to do so! In the past this has not been a view shared by the Urology staff, but this appointment we were in COMPLETE agreement! I can only say THANK YOU LORD! It was so refreshing to not have to argue my point and come away doubting myself again. His kidneys look perfectly healthy, his bladder is clear and we emptied it 100% with a standard catheterizing, so we have the all clear for 6 more months!! Yes!

The other BIG issue or worry that I had going into this trip is the amount of back pain that Nathaniel has daily. It has gotten worse, and Nathaniel is in tears often about his pain. We were quiet worried that these were symptoms of a tethered spinal chord. The surgery for a tethered chord is VERY invasive and the Neurologist (who is a fabulous physician) feels that is will likely take away Nathaniel's ability to walk. This is NOT an area that I want to go... ever! But especially now.

After MUCH poking, prodding, pulling and tugging, we were unable to reproduce his pain.... and this was GREAT news!! If the chord being tethered was what was causing his pain we should have been able to trigger the pain but touching the "right" place. Because MANY of us could not reproduce the pain, so we consulted with the Internist, Physical Therapist and Neurologist Nurse Praticioner.

It was decided that Nathaniel's core strength is actually getting STRONGER (praise the Lord!)!! Usually with people with Spina Bifida, they have weak core muscles, and they weaken more over time. Nathaniel is actually getting stronger, gaining abilities and becoming more stable! This confused most everyone in the room, but not me! I know the "alternative medicine" we have been using, and am thankful to see others noticing the results without me pointing them out! So it has been determined that because he is SO active for a child with SB, and because his is gaining strength in a positive way, his pain is actually muscular and treatable with a simple anti inflammatory medication!! I am so thankful! We were taught so new stretches, he was given a pain blocker treatment (without having to be hospitalised over night like in the past!) and prescribed some new medication. I am praying that this works out well and he can go back to his active life without pain!!

Both of these areas are complete answers to prayer for me and Nathaniel, and I thank everyone one of you who have joined us in prayer over this from the bottom of my heart! My heart is so much lighter and I have so much more hope for my son after this appointment!

Like I said above, the past week has been a battle. I feel like I have been in the midst of a strong storm for years, but this week has seen it all break loose even more!

Psalm 90:15-17 (New International Version)

15 Make us glad for as many days as you have afflicted us,
for as many years as we have seen trouble.
16 May your deeds be shown to your servants,
your splendor to their children.
17 May the favor of the Lord our God rest upon us;
establish the work of our hands for us—
yes, establish the work of our hands.

The last few days have been a roller coaster ride from "H. E. double hockey sticks" with my husband. He is drowning in a storm right now, but choosing to cling to the wrong lifeboat. It's very frightening to watch, but I know that ALL I can do is step aside and pray. I can NOT allow myself and the kids to get drug under with him. He has been called out in love and put on the hot seat, but his reaction has been to hide, and when that doesn't work to harbor anger and lash out. I have spent ceaseless hours praying over him, for him and for the situation. One scripture that really hits home in this situation is 2 Chronicles 30:8-9 (New International Version)

"8 Do not be stiff-necked, as your fathers were; submit to the LORD. Come to the sanctuary, which he has consecrated forever. Serve the LORD your God, so that his fierce anger will turn away from you. 9 If you return to the LORD, then your brothers and your children will be shown compassion by their captors and will come back to this land, for the LORD your God is gracious and compassionate. He will not turn his face from you if you return to him."

Because of the anger, the lashing out and the unpredictability I have chosen to again take some space from the situation. It's such a hard choice for me, but I can see him loosing all reason and ability to think. I can't have my children witnessing that. Please join me in praying that God breaks through the strongholds in his life and cast the enemy out of his skin. For him, not for me. I know I CAN survive as a single mom, I have done it before. But it hurts my heart to see my children's father loosing such an important battle! It hurts my heart to hear their questions and have so few answers to give them. Please remember them too in your prayers.... especially the innocent children this touches!

Through it all I pray that I can continue forward in my journey to be a Proverbs 31 wife and mother! ("She watches over the affairs of her household and does not eat the bread of idleness.
28 Her children arise and call her blessed; her husband also, and he praises her"

Even though we are exhausted, we have a busy and hopefully joyful weekend planned! We are looking forward to meeting up with and hanging out with a great family that we have come to know through the blog world, we have multiple performances at Harbor Festival, and we have a special guest coming to spend the next week with us! So, I guess it's time to get started on it all. I look forward to sharing some great pictures and stories with you very soon!!



{april kennedy} said...

I cried while reading this whole post...for so many different reasons. I am so happy for the good news and pray for you and your family through these tough times. We are driving right NOW as I type this to come see you guys! We are excited! I think we will be in San Luis around 4:00ish or so. We will call when we get there or you can give me a call on my cell. Hugs to you all....hugs in person...soon!

The Clan Piccini said...

I'm very happy for you AND for Nat for such good news... and even more happy that you guys had a pretty good trip altogether. Miss Audrey is so mature beyond her years, I can just see her there taking it all in, asking questions :o)

Love you guys!!!

Randy P. said...

Hang in there sister, the Lord will continue to sustain you and keep you under the shadow of His wings! You're doing a great job, and Jesus is proud of you as a mother whom He entrusted these precious children too!