Sorry for posting the wrong link. Thanks to Jenni and Megan for catching it. Here is the correct one.
http://www.dgckids.org/run_for_sight/index.html
Jen
Hello all,
Amelia is seen by many great therapists. Her vision therapist, Jo, works with a company called The Delta Gamma Center for Children with Visual Impairments. They are amazing and are helping us learn to enhance what Amelia sees and to retrain the vision/processing centers in her brain. I have learned so much about vision and all that goes into “seeing” from Jo. And we have seen improvement in Amelia’s vision.
I am writing to recruit you all to join Amelia and I (Steve will be out of town) at the 16th Annual Run for Sight, sponsored by Delta Gamma. The run (or walk) is on Sunday May 4, 2008 and begins at Union Station. The early bird sign up ends tomorrow (sorry for the late notice) April 24th. You can register or learn more online at dgkids.org/run_for_sight.
If you will be coming let me know so I can look for you and give you a “Team Amelia” sign.
Hope to see you there,
Jen
Hey Friends,
Sorry this has to be brief, but I just noticed that I had not posted anything for a month. Time flies.
We have a lot to report…Amelia continues to make slow progress. She has started to look at us for brief periods of time. She used to kind of look through you but now if you are patient you can get real eye contact. She continues to see a vision therapist twice a month and we do daily therapy based on what Jo tells us to do. We are still waiting to see Dr. Tyson the eye surgeon, hopefully that will happen very soon. She moves her arms and legs more, but not on command. She also is moving her mouth more and making more sounds. Whenever she moves or “talks” we clap and get excited and tell her what she is doing so hopefully that will ignite something in her brain to do it more and on purpose.
We bought a house and spent the last week painting, tearing up carpets and working on the lawn. It is so exciting. We were and are exhausted but the work is “fun”. Steve is still there this week working and doing stuff for RUF (his future job). We plan to officially move on May 26th.
I have to run to an audiology apt for Amelia. I will update more later and post some great pictures on our blog soon.
Prayer requests:
For the transition to Lincoln, that doctors and therapists would fall into place.
For patience with the insurance companies as coverage for the “sick” is not as easy to come by as for the “well”. We are having difficulties with this. I keep calling different people hoping to find the answer I want but it is not happening. I have some helpers looking into things for me. But it looks like she will be without coverage for a couple of weeks as we transition from one state to another.
Praise God that we found (with some help, Thanks Diane) a great primary doctor who is not concerned about the insurance and is comfortable with caring for kids with multiple and complex medical problems.
Praise God for the lovely friends who helped us the week we were gone. Janet and Dick, Dan and Alyssa and Carter, Heidi, Kara, Strictly Peds staff, Lou and Jason. We appreciate your friendship and care for Amelia so much.
More later,
Jen
It was one year ago, March 15, that we got the devastating news that our 4 month old had leukemia. The year has been long, it feels like I have aged 10 fold, but God has sustained us. He brought Amelia through a death sentence into remission and he saved her life again from an infection that should have taken it. Her life has hung on a precious balance. It is easy to forget when one is healthy but all of our lives hang in precious balance, dependent on the Lord for our every heartbeat. There is much that I have learned this year but that is one lesson that has sunk deep. I AM NOT IN CONTROL. I can make plans (and I do) I can hold tight to them (which I also do) I can imagine a safe and comfortable life, but it is not guaranteed. What is guaranteed is that God is in control he loves me and cares for me. I don’t pretend to have the answers. I have (am still) dealing with anger and questions that don’t have answers yet I can’t stop asking them (the why questions). These are just some thoughts.
Amelia is still holding her own. I am convinced that she is the strongest little girl I know. She is more alert and her eyes are more aware. One thing that makes us really happy is that she is showing more facial expression. We continue to rejoice in the small steps Amelia makes. She had a three month follow-up with her neurosurgeon and we were encouraged by his response when he saw her. Note that neurosurgeons are not known for their strong encouragement and positive affirmation (at least hers aren’t, they tend more towards “realism”). When he walked into the room he said “Wow girl, you look good. That’s good because I worked hard on you” We will have an MRI in May to check where things are before we move, but things seem to be working well in the shunt department.
We continue to have issues with Amelia’s tummy. We have tried several different kinds of foods at different volumes and rates. But she still throws up sometimes, it is less often since we last changed things, but still happens. We are probably going to have to see a GI doctor but have been trying to avoid that as we have plenty of doctors to see already. We will do whats best for Amelia in the end.
We are making plans for the move. Insurance is topping the list of things to figure out first. We have some leads for physicians and services in the Lincoln area but would welcome any help advise. On a good note we found out that Children’s in Omaha has opened a new specialty sattelite clinic in Lincoln, hopefully this will reduce the number of trips we have to make for appointments. I am very anxious about leaving Amelia’s therapists and doctors here. Everyone loves her and does such a great job. I am trying to take things one at a time and not get overwhelmed with all we need to do and the great people we are leaving (I am also deeply saddened to be leaving my beloved Trader Joe’s and Forest Park).
Steve and I are currently on vacation with some good friends. Many people are to thank for this being possible: Carol (my mom), Liz and Marty, the Anderson’s, Strictly Peds daycare staff, Jim Allen, Tim Jones and the Smith’s are some of them. We are having a great time and are enjoying a much needed break.
Thanks for continuing to pray for Amelia.
Jen
Hey everyone-
Long overdue report from the Allens. Much has happened in the last few weeks. I will give you a few updates on Amelia’s progress and all things regarding our future. First, thanks for hanging with us.
Again, small improvements continue regarding Amelia’s recovery. Though we still see little volitional movement in her arms and legs, we do see a bit more eye control. Amelia has ‘inquisitive eyes’. She will fix her eyes on objects for several seconds when they are placed in front of her face. This is great improvement as before she would simply look past any object placed in front of her. There are no real answers to this great improvement, except that God himself is placing his finger upon Amelia’s brain and continues the healing process even if ever so subtly. We are thankful to God that we have the privilege of seeing healing this side of heaven. Pray to God that Amelia would continue to gain control over her eyes. Additionally, pray that she would continue to give meaning to objects- that she would fix her eyes upon objects for longer periods of time. All this to say, her therapies are going well. We are thankful for Amelia’s therapists- they all love her. Amelia seems to be gaining some expression back in her face, which we are thankful for. Amelia especially loves art projects (of course, we help her with most of the work)– she seems to have a grin on her face everytime she engages this type of activity. Funny to see some familial connections here. Jen’s sister is an art teacher; my brother also does well at art.
While there is great news here, we have some bad. Amelia continues to try and fight off a cold– this has been going on for several weeks. This is particularly stressful because her immune system is not up to full snuff (remember that she still goes in every three weeks for antibody infusions). The other stressful thing here is that she exhibited similar symptoms when she was first diagnosed with leukemia. I must say that she has no fever and her cold seems to be getting a little better. Additionally, her white blood cells (the infection fighting cells) are only slightly elevated. Nonetheless, the first year poses the most risk for relapse. Please pray that God would continue to sustain her life if it’s his will. We love her and are changed people from getting the chance to take care of her. Again, her strength and perseverance are lesson for us all.
On another note– I (Steve) have been offered a job as a college pastor in Lincoln, Nebraska. I will work as an ordained pastor with the Presbyterian Church in America. In many ways, this is some light at the end of a dark tunnel. This gets us back near family and friends and the job is a great fit for us. It offers flexibility which will help when caring for Amelia (I will be on a student schedule with breaks in the summer and winter). Jen hopes to continue part time as a registered nurse with one of the hospitals in town. We have continued the walk forward. . . actually God continues to carry us forward. We will report more later.
much love,
Steve for the Allens
Quick update. Thanks for praying. Amelia did indeed recover quickly. She seems to be back in business, though she is fighting off a little cold/sniffles, which makes her stomach ache a bit. Thankful to you all,
Steve
Real Quick-
Amelia seems to have caught a stomach virus of sorts. As you know, this can be a bit harder on Amelia (due to compromised immune system etc.) than on the typical 1 year old. Please pray for perseverance to allow her to ‘weather this storm.’ Pray that when she vomits she would not aspirate taking fluid into her lungs, which can lead to pneumonia. Please know that it doesn’t appear too serious right now and she should fully recover-
As always thanks. We’ll give you an update shortly.
Steve
You all may not realize how much you mean to me (Jen). Your encouraging words just make me cry and just knowing that so many love us and pray for us…all I can say is WOW. To answer, I do kiss Amelia’s adorable cheeks nearly constantly. Through all her suffering she has not lost her sweet personality and thankfully she loves to be “snoogled” too.
A few updates:
The functional vision assessment went well. Jo (the vision specialist) was able articulate the improvements that we have already seen and were given helpful ideas to enhance what she does see. She gave us great ideas to help put meaning to what Amelia sees. It is probably the case that Amelia sees (we don’t think anything is wrong with her eyes) but that she doesn’t know what to do with what she sees. This is called a processing impairment. This is another prayer…that Amelia’s brain would learn to process what she sees.
Encouraging news! Amelia has seemed to gain a bit more eye control and is looking left to right, and keeps her head mid-line a good portion of the time. If you get close to her face and talk to her, she will glance your direction. Additionally, a little volitional movement has returned to her arms and legs (though this is very subtle and inconsistent). Last night, as I was doing physical therapy with her, I stood her up and she bore weight on her legs for about one minute! Not meaning to be sentimental but Amelia truly is our hero- her model of perseverance inspires Jen and I daily.
We will see a pediatric eye specialist the second week of Feb. He will be able to tell us how her actual eyes function.
Concerning Jen and myself- We are finally able to get enough breath to consider future situation etc. In about a month we will make decisions on where we will live and work. Currently, we have moved from the Schamps to our good friends, the Andersons (to spread the love). Thought it would be a good time to spend a few months with the Andersons- whom we have known for several years- though we miss the fellowship of the Schamps (they really helped pull us out of the darkness of the earlier days of living in the PICU).
Finally, I realize these updates are far and few between, but the days go by as you all know in your own lives. Remember to pray that Amelia would regain eye control and begin to put meaning to the objects that she sees.
sincerely,
Steve (and a bit of Jen) for the Allens
I posted a couple of pics from our Christmas extravaganza on our family blog.
Good day!
I (Jen) am finally writing a post. That is the reason it is so slow in coming. My friends can attest to the fact that I am not very good at keeping in touch when distance separates, I rarely call or e-mail. In fact there are so many unanswered notes in my inbox and mind that I don’t know where to begin, so I don’t. Kind of a vicious circle. So everyone please be patient with me (as you are and have been)…..
We had a quiet Christmas here in St. Louis. I had to work, but only 4 hours on both Christmas eve and day. Instead of going home, which we had planned to do, we decided to pack up our stuff (in two vehicles because there is so much of it) and headed to the Reeve’s house. We are pretending that we are on vacation and enjoying doing nothing special. We are sitting by the fire, eating too much, getting hooked on Heroes (at least I am) and just relaxing. It is wonderful.
Amelia is still slowly improving, she is looking more alert and aware and moving her head more to sounds and to look at things. A couple of times this week we have seen her fingers move. She is getting a lot of therapy (physical, occupational and speech) daily from us and at least weekly from professionals. One of our favorite times is doing the speech therapy (Janet, we love the physical therapy, too but Amelia often protests when we move her stiff joints and stretch her tight muscles). Her therapist Courtney is intent on giving Amelia a voice and Amelia really seems to enjoy it. We help her play a piano and open gifts and even put on pretend make-up. We try to let her take as active of a role as she can putting the brushes in her hands and helping to put on the “blush”. My tendency is to do things for her, but giving her the dignity to help and participate really makes her happy.
As I reflect on this last year I am overwhelmed with so many emotions. It truly has been a terrible year in my estimation. Yet I am so thankful. I am thankful most of all that Amelia is still here with us. As difficult as caring for her is physically and seeing her suffer and not be able to “do” and experience normal things is emotionally, not having her here would be unbearable and is unimaginable. I am thankful for my wonderful husband. If you know Steve, this is not a surprise, but I would not have endured this without him by my side. He has listened without giving advise and been so patient as I struggle through the emotions of having a sick and disabled child. I am thankful for our friends and family (you!) who have helped and supported us through this time. Most of all (even more than the “most of all” above) I am thankful to God who is my rock and salvation. I have to be honest and tell you that I am angry at God and have so many questions for him. Thankfully He can handle my anger and my repetitive questions and I am dealing with them, not hiding them. But truly I would not have survived with out KNOWING (though not always feeling it) that there is a God who loves me and cares for me and has a plan set out at the beginning of time for me, for you and for the world. Steve has something to say then I will share our prayer requests….
I hope that you all are engendering a spirit of thankfulness as we become mindful (perhaps for the first time for some of us) of the reality that God came down- being born into humanity- and took a place among us in Jesus. Why did he have to come? Great question, Steve. For many of us, this is easy to answer. We look around and immediately can see that things are not as they should be– one need only look within to find brokenness and betrayal to see the need. Jen and I can attest. Jesus came to establish peace on earth, seeking to restore it back to full health– everything we see with our eyes (the land, the skies, the seas and of course, the people) is in the midst of God’s restoration plan– ((((one need only embrace Jesus as their sole deliverer; their king and savior;)))) indeed, embrace the Christian story (which is not mythical but real history) as their own to partake of said peace.
Please pray:
As always for Amelia’s healing and recovery.
For her digestive system as she is not handling her food very well. She is growing just fine so don’t be too worried.
For us for patience, perseverance and peace.
For my dad, stepmom and family in Valentine. They had a devastating fire the week before Christmas. Thankfully they are all safe, but there is much stress associated with the aftermath and rebuilding.
For yourself and each other that you would find something to be thankful for. I look at my life and often think it is so difficult, then I hear about or meet someone with much worse problems and worries. Even if you don’t know someone with worse problems just read the world or even local news. No matter what kind of trial you are experiencing take time today to look outside of yourself and be thankful.
Praise God:
That Amelia is improving physically and emotionally.
That Steve and I have remained healthy and somewhat sane (some of you may think and know to the contrary).
For each of you. I never knew that there were so many great people out there.
Jen
**If some of this doesn’t make sense or there are mispellings Steve is not here to edit (so it is really his fault), (maybe my mom will help?)
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