Today’s worries
…are enough for today.
That has been our help over the past whirlwind of a week as we’ve dealt with the rollercoaster of rough news about the health of our daughter Isabel. For those of you who we haven’t had the opportunity to share with, let me explain what has happened and what we know today, and then how we are reacting to all of this news.
For about 2 months now, we had been aware of several developmental delays in Isa, particularly in holding up her head consistently and in loosening the muscles in her arms to help her to reach out and grab things with her hands. We had met with an occupational therapist for an informal evaluation just after Memorial Day. She helped us with several exercises to work on strengthening Isa’s neck, and observed that Isa probably had a problem known as Sensory Integration Syndrome, particularly in the sense of touch. So we had been working on this with Isa and were seeing some improvement as we waited for a therapy referal through our health insurance.
A week ago Wednesday, we were finally able to see a physical therapist, who was very concerned by the motor skill delays in Isa. She communicated her concerns to our family doctor. So when I took Isa to see him last Friday, he was aware of all of these concerns. But while he was examing her, he also noticed a bump on the top of her head. He didn’t share this at the time, but he was concerned that it might be a tumor in her brain. He scheduled us immediately for an ultrasound to see what was causing the bump. Since Veronica was at work, I took Isa to the hospital to do the ultrasound.
The ultrasound was very difficult for Isa, since it required putting pressure directly on the top of her head, which is a very sensitive area for her. So I didn’t think much of it as they took us in to do a CT Scan of her brain. After the scans, Isa & I stopped by Veronica’s classroom, and then I took her to our babysitters to go home and wait for the doctors phone call.
The news I got from his phone call later that afternoon felt like a punch to my stomach. While the good news was NO brain tumor, the difficult news was the discovery of damage to Isa’s brain and also a condition known as hydrocephelus, or excess fluid around her brain. Over the phone, the doctor indicated that while there was no immediate threat to Isa’s life, she would probably have severe disabilities in her development as a result of the damage to the tissue of her brain. He scheduled us for an appointment with a pediatric neurologist - the chief of staff at the hospital - to give us a clearer diagnosis from the test results and to make a plan for treatment. Honestly, we weren’t sure what to expect.
We met with the neurologist yesterday. She examined Isa herself, and we were very encouraged by how well Isa interacted with her, even though she was a stranger. Then the doctor asked us if we wanted to see the CT Scans of her brain. What we saw was pretty shocking. Apparently, Isa probably had some type of stroke or “infarction” - either very late in the pregnancy or during the birthing process - that cut off the blood supply to her brain, interupting the growth/formation of her brain. The doctors have described this as a “shrunken” brain. Based on the CT Scan, I would estimate there is a loss of 30%+ of her brain tissue, which is why there is so much fluid in her skull. Parts of her brain - at the base of her neck, the lower brain - are fully formed, while other parts are either incompletely formed or missing - the right & left sides and the top of her brain. She does have a significant portion of her right frontal lobe & a much smaller portion of her left lobe. (This is my best description of what we saw.)
Then the doctor shared her observations with us about Isa’s current state and her future potential. This is where we began to feel most encouraged. She said there is no threat of future damage to her brain, that whatever happened was a single event. And while the missing portions of Isa’s brain won’t ever grow, the existing parts of her brain - with extensive therapy - can be “retrained” to take on new “tasks” and can learn to compensate for the missing portions. It seems that Isa’s vision is somewhat effected by this, as well as the motor skill development that we were already seeing.
The doctor shared with us that Isa was not the child she expected based on the CT Scan, that the interaction & evaluation she did of Isa was much different (for the better) than what she had expected. That there is no physical deformity and that Isa is fully formed physically, able to hear, laugh, coo and use her voice, were all very good signs. She is a beautiful little girl. Also, that Isa wasn’t having any problems with swallowing was a very good sign. There were other things that we talked about, but I can’t fully recall every detail.
At this point, we are still feeling a whirlwind of emotions and reactions. On the one hand, our hearts are heavy and saddened by the news about Isa’s brain and the road ahead to help her develop as much as she is able. We cried a lot over the weekend, not knowing fully what this would mean for her potential development. As a parent, I can’t think of any more humbling experience that for your child to suffer or have this kind of difficulty.
On the otherhand, we have sensed God’s presence with us in the midst of this really difficult news. We rejoice in the gift that Isa’s life is for as, since damage to her brain development that had happened any earlier in the pregnancy could have been fatal. But she is alive & has been brought into our home. And while we have a lot to prepare for to care for her needs, we are very encouraged by the potential for her development with the right therapy & stimulation of her brain to learn to compensate for the damage that she has incurred. We won’t know exactly what type of limitation she’ll experience, but it is possible that her limitations will be minimal based on her current condition and the potential for therapy stimulating her brain. Also, that she isn’t experiencing any pain because of this is a huge relief for us.
At this stage, we really covet all of your prayers and support. One of the ways that we have felt really met by God was through the prayers and practical help of our family and friends that we were able to share this with in the urgency of this past weekend. As parents, we know that we have a long road ahead and will continue to need your help & prayers in order to see Isa develop to her full potential. We really believe that God loves her and that God has real authority to heal her. Whether that comes in a single moment through touching her brain, or over time through lots of therapy, stimulation & love, we can’t predict. As a family, are preparing ourselves for the needs that this news will present for us.
I could say a lot more, but I’ll stop here. We’re still sorting out all of what this will mean, the difficult news from the good news. If you would like to pray with us for Isa on a regular basis, email me and I’ll give you specific prayer requests for her. Otherwise, you can check back her periodically to see how things are going. We’ll continue to put updates about her health, as well as the cute photos & stories about how she is growing as a child. Thanks.
UPDATE: One Year ago, Many to go.
July 7th, 2006 at 12:02 pm
thx for sharing in the midst of difficulty - eddie and I will definitely keep your fam in our prayers.
July 7th, 2006 at 12:24 pm
Hey Scott and Vero, We’ll be praying for the three of you!
July 7th, 2006 at 12:26 pm
I’m praying for you and asking my friends and family to pray for Isa and mom and dad.
July 7th, 2006 at 12:27 pm
Scott,
Becky and I send our hearts out to you and Vero. That is really difficult news. We are really shocked and saddened with you. We pray that Jesus’ presence will minister to your hearts and to Isa’s health.
Please let us know if you need anything.
In Jesus,
John
July 7th, 2006 at 12:37 pm
I am praying for the both of you
July 7th, 2006 at 1:41 pm
Hey, Scott and Veronica,
Isa is such a beautiful child of God. My wife, Judy, and I will be praying for you. Thanks for sharing this.
-Jeff
July 7th, 2006 at 1:50 pm
Scott and Veronica:
We are praying with you through this! May God continue to meet you in the midst of every moment.
Rob and Trudi
July 7th, 2006 at 1:56 pm
McLane’s,
We will be praying for you. We are here for you.
Montanez’s
July 7th, 2006 at 2:26 pm
We will definitely be praying for your family. God has watched over Isa from the very beginning and brought her into your home. I am confident He will continue to pour out His love toward Isa in amazing ways.
July 7th, 2006 at 3:11 pm
Scott and Vero,
Please know that I will be praying for Isa, for the two of you and for the doctors who will be treating Isa.
May the Lord keep you in His love and give you the strength and wisdom that you will need as Isa grows and develops.
Love,
G’ma Dorothy
July 7th, 2006 at 3:25 pm
Kevin and I will definitely be praying for you three. I am grateful to hear that the neurologist was so hopeful about the potential of Isa’s brain to be stimulated and retrained. Maybe Jesus continue to give you and Vero the faith and strength that you need day by day.
July 7th, 2006 at 4:05 pm
Scott, Vero, and Isabel, My heart goes out to all of you. Know that God sees exactly what is happening inside Isa and that he has all authority! Please include me on the regular prayer list.
July 7th, 2006 at 7:50 pm
Hi, we are friends of Rudy’s and he shared a bit of what is happening with your family on his blog. As the mom of a son with hydrocephalus (shunted) I will be praying for strength for your family, peace in the midst of a whirlwind of emotions, courage and God’s guidance in order to make a myriad of decisions for your daughter and preserverance to keep your joy in the Lord while going through the rollercoaster ride. Just know that there is another side to all this and that whatever the outcome or final diagnosis, your daughther has already impacted her environment and mostly you, you’ll learn alot of her life whether she ends up meeting milestones or not. Enjoy every moment with your special daughter. God bless you and I wish you God’s best.
July 7th, 2006 at 9:12 pm
Scott and Vero–
Thank you for sharing so vulnerably and extensively about this. I am confident that God will use this for good. As I learned with my mother, earthly doctors are a blessing, but we answer to a higher Doctor. I have yet to meet little Isa in person, but I’m sure she’ll be a champion. Will be checking in for future updates.
July 7th, 2006 at 9:41 pm
Scott & Vero,
We are praying for Isa and for you. None of us knows what we are in for when we welcome these little strangers into our homes. May the God who gives good gifts to his children also teach us how to receive them, in his grace. Isa is lucky to have great parents–and a great God–to walk with her.
Yours sincerely,
Greg & Claudia
July 7th, 2006 at 10:01 pm
Hello Scott and Vero,
This is Jocelyn, Lourdes’ friend from Los Angeles now living in Arizona.
I am overwhelmed with compassion and respect for the strength that you are determined to have now faced with the reality of the difficulties ahead for you and your little one. Yet, the first thing that came to mind as I read your blog, is my grandmother’s life. Let me share this briefly–had it not been for her coming to Christ in her late adulthood, most of my family would not be in the knowledge and love of Jesus. My great-grandfather, while my grandmother was still yet an infant, attempted to hurt my great-grandmother with a machete and missed her but injured my grandmother severely in the head. It was so severe my great-grandfather fled and never returned. It is only a miracle that my grandmother survived. My grandmother is now 82 years old and still has a scar on her head that is a few inches long. It is hard to accept that she should have died from the injury, but she did not, and my grandmother testifies now that it was because the Lord saved her. The Lord had a purpose for her. She was meant to have life and bless others, not just the family. I pray that each day you are continually strengthened and filled with joy as you experience daily life with Isa. Through the challenges, Isa will bless you and others. You shall see. She does have a purpose. She was meant to live and grow and love, and be loved by loving and committed parents like the two of you. God bless you both.
July 7th, 2006 at 11:16 pm
SCOTT! I’ve missed you. I couldnt believe what I was reading just now. I’m really sad to hear this news and I can only imagine all the crazy emotions youre going through right now. Im going to definitely say some extra prayers for Isa and especially you and Vero because I know how much stress and worry you two must be going through right now. Just remember that God never gives us anything we cant handle. Youre a great dad Scott. Isa is lucky to have you. God put her in good hands. Love you Scott, and send my love to both Isa and Vero for me
July 8th, 2006 at 6:16 am
Scott and Vero…we Dixons are praying for you and Baby Isa! Take care…
July 8th, 2006 at 11:33 am
Scott, Vero and Isabel,
My prayers are with all of you. Scot and Vero, God placed Isa in your hands because you both are the best to carry her through these hard times even at her young age. God could have placed her in somebody else’s hand but God wants for YOU BOTH to experience the MIRACLE that He will do with Isabel and both of your lives. Keep the faith and just believe that this a MIRACLE in the making.
Love you all,
Morena
July 8th, 2006 at 12:27 pm
my wife and I will be praying for you… the Stewarts
July 8th, 2006 at 1:04 pm
Hi Scott and Vero,
I have been praying for and asking after Isabel since Vero told me about the Sensory Integretion Syndrome diagnosis several weeks ago. Isabel is a beautiful girl, and it’s clear God has been looking out for her by placing her in such a loving and devoted family. Will continue to pray…
July 8th, 2006 at 2:56 pm
Thank you for sharing your life with us. Thank you for your transparency. Let me know how I can specifically pray for this situation.
July 8th, 2006 at 10:55 pm
We got your back in prayer, and are urging friends around the country to pray as well!
July 8th, 2006 at 11:18 pm
I’ll be praying for your whole family.
July 9th, 2006 at 12:26 am
Vero and Scott,
As you know I love you both so very much. I will also be praying for Isa as well as all the people around you. I cannot imagine Isa being in someone else’s care. I know that you prayed for a child that will help you glorify God through, and I cannot see a better chance to do this than now. Your faith will be shown to all the people around you and it will magnify God’s power through Isabel. I am so proud of your faith and of your love and depeddence on God. He is the only one that can see the big picture and you are the perfect parents for your daughter. Remember that you are great parents and have been since the first day Isa was in your arms. Isa is so lucky to have you and to be loved by you. I am here for anything. I love you three and I will be praying not only for Isa, but for you two as well. With all my love, Lizbeth
July 9th, 2006 at 8:47 pm
You are in my prayers and the staff at uywi will begin to pray as well.
July 10th, 2006 at 10:43 am
Orlando and I will be praying for you, Vero and Isa. We are saddened but hopeful that God is with you and has a spectacular plan! It may not make sense to us but it does to Him. Rest and trust in Him.
July 10th, 2006 at 3:31 pm
You guys are in our prayers here in Charlotte, NC.
July 10th, 2006 at 11:40 pm
May God bless you with his presence in this time. It seems like there’s a good deal to hope for and be thankful for, though I know it’s a hard time. Blessings be on you guys.
July 11th, 2006 at 11:42 pm
We are thinking of you and praying for you. We are so sorry that you and Isa are going through this. May the Lord surround you with His love and comfort each and every moment of the day.
July 12th, 2006 at 7:14 am
Estamos orando por ustedes. Que la paz de Cristo llene sus corazones.
July 13th, 2006 at 2:20 pm
I will be praying for all three of you email me with the correct way to do it.. and I will ask my family to pray for Isa God is with you guys..
July 17th, 2006 at 5:27 am
My name is Kafi, wife of Rudy. He and Jeremy told me about your baby. Can you put a picutre up, so that I can see her and imagine her as I pray for her and you. What hospital are you at?- Kafi
July 17th, 2006 at 12:24 pm
We have Kaiser. Our family doctor is in East LA, and the neurologist is at the Sunset LA hospital.