Today I wanted to give my online friends an update on our youngest son, Alistair. He is now 14 months old, but for much of his life, we have been realizing that he is not growing and progressing like our previous children. I haven’t said much online because we wanted to be sure it wasn’t just because he was born five weeks early and needed to just “grow out of it.” However, as time has gone by, we’re realizing the problem is a little more serious than that.
So that you can pray for us and know a little more about our family, we’ve decided that now is a good time to share a little more.
Last week, we had a consultation with Dr. Deborah Renaud, a pediatric neurologist at the Mayo Clinic, to check Alistair’s development. In some ways, he’s doing really great, but in other ways, he truly is not progressing as he should be. We had a very long appointment with the doctor, and she was very kind and asked wonderful questions. We were very pleased with our appointment.
Alistair is now awaiting two more appointments. First, Dr. Renaud is recommending an MRI. Alistair will be sedated for about 5 hours as they do a complete check of all areas of his brain. Dr. Renaud suspects that Alistair suffered from a lack of oxygen during his birth, possibly for several hours and for a couple different reasons (placenta abruptia and extended heart decelerations after contractions) — all combining into a high probability that his brain could be injured (cerebral palsy). The MRI can tell us where the brain injuries are and can help us predict the problems he’ll have because of them. In addition, because he is still young, we can help him compensate for these injuries by reteaching his brain to use different pathways to accomplish the same things. It’s important to do this sooner rather than later… you know, it’s harder to teach old dogs new tricks. 🙂
While they’ve sedated him, they’re also going to run a complete panel of blood work, just in case nothing is wrong on the MRI. They’ll be checking for anemia (he’s pale, and a lack of oxygen in his bloodstream could cause some of the same symptoms he’s having — such a simple solution, if that’s it). They’re also checking for all the autoimmune diseases that I have, as well as the more common metabolic disorders that can cause problems in children, plus re-screen all the common genetic problems that they routinely check for at birth, just to be safe. Finally, they’ll be checking for IgA deficiency, since it runs in our family and his immune system seems a little weak.
They’ll do all this testing first thing in the morning, then run the MRI, then we’ll all meet with Dr. Renaud in the afternoon to get the results — all in the same day. What a blessing! So that very day, we’ll have quite a few answers.
On another day, when he’s feeling himself, we’ll meet with “Physical Medicine,” which are fancy doctors who get paid big bucks to play with babies all day. They’re going to spend several hours playing with Alistair, feeding him (since one of his problems is that he can’t feed himself yet), and just observing him. Then they will make recommendations to local services, maybe right here in our town, that we can take advantage of to help him. They will also be checking his vision, his speech (on which he’s scoring above average at the moment, praise God), his tongue for swallowing problems, his muscles (which are spastic, or tight and sore), and maybe even watch him take a nap. (My oldest daughter says that this would be a fun job to have, to get paid to play with babies and children!)
As of today, I don’t know when these two appointments will be. We’re supposed to get a phone call sometime. It will take from a week to 2 months to get it all scheduled, they said. Isn’t healthcare great? LOL! So I’ll have to let you know.
Dr. Reynaud’s opinion is that Alistair isn’t doing too badly, but that he needs to be checked, and that the younger he is, the better it will be. So that’s all we know. We thank you all so much for continuing to pray for us. We thank you also for understanding if some weeks I’m more tired than normal, if I don’t always get everything done online, or if I’m a little slow responding to your comments and email. I love you all, but my kiddos and husband come first!
Finally, I praise God for a new appreciation of all you mothers of “special-needs” children. I had no idea how much you do! I admire you, and I hope to learn much from you in the days ahead.
Hugs to all,
Kathy says
Praying for you and your family! I pray that you will get the appointments scheduled soon and that God will grant the doctors wisdom as they search for answers.
HoneyB says
I’m praying for you and yours this morning, Anne. Thanks for sharing! May you and your husband have the wisdom from the Lord in making choices and getting the assistance you need.
Kim says
I believe your son was placed into capable hands when you were blessed as his parents and his family. Our prayers are with you and no matter the outcome, he is already receiving the nurturing care his brain and body require. God Bless.
Sheri Graham says
Anne, I’ll be praying for your family and for little Alistair. Do keep us updated as you can. God bless you!
Tammy says
Anne,
I pray that you will receive news of the best possible outcomes for your son.
Thank you for sharing something so private with us.
Blessings to you and your family!
Margaret in Phoenix says
Anne, I’m so sorry to hear about all the challenges that Alistair and your family have been dealing with. I’ll be praying for you all. One of my sons (age 7) has leukemia, and the other (8 1/2) has Tourettes Syndrome and possibly Aspergers and/or ADHD……we’re still waiting to see a specialist on these latter things, so I know how you feel about waiting for answers. Life is often unpleasant and wearying, but God is our strength! May He uplift you all with His great love and peace!
MaryGayle says
Anne,
I will be praying for you family. God has entrusted you with your precious son, and may you not be distracted by “us” out here – You are absolutely right on… husband & children come long before “us”. Thank you for sharing your need, we can all be lifting you up to the Lord, Alistair, your husband, your other children, and you, as well as your health too!!!
MaryGayle
Joanna says
Bless ur heart! In the time of crisis, ur faith inGod is proven! Stay strong and trust the Lord. I will be praying.
amydeanne says
I’ll be praying Anne… my youngest was born 5 weeks early and had difficulties as well – fortunately he grew out of it, but I understand the scariness of it as well!
hugs and prayers!
Kathryn says
Your part of the birth story for Alistair reminds me of my birth story for a couple of my children.
Ask them to watch for his muscle tone as well. Watch closely for how he deals with sensory input. (mine can be verbally smart sometimes and totally unable to get to paper or remember from one day to the next what was learned.) It is a very slow process. Still, God’s timing is awesome. Seeing tiny results are so encouraging.
Missy says
Anne, you are doing a great job! Thanks for sharing. Besides my prayers for you and your family, may I also offer a suggestion/story? My nephew was also born several weeks early (four, I think) and also contracted a respiratory infection in hospital. He was on a ventilator for weeks. He does have some developmental issues and one of these seemed to be neural issues that caused him to not use half of his body. For example, when he would try to crawl he would drag one leg behind. Just as a precaution, my sister-in-law took him to a pediatric chiropractor, and after one adjustment he had no more neuro-muscular issues. The muscle spasms you mentioned Alistair experiencing may have a simple solution. But the neurologists won’t usually consider the spinal alignment in making their diagnoses. They just aren’t trained to . I hope you will give it a try, but be sure your chiropractor has been trained and is experienced in pediatric manipulations, especially with infants. Praying for good results with all the tests.
Joycelyn Connet says
I am continuing to pray for your precious son and your family!
Blessings!
Joycelyn
Michaela says
Thank you for sharing, I will be praying for you and your family. Your son is so precious! I just want to pick him up out of that picture and hug him!
ruth says
Anne, praying for you and your family. Isn’t it wonderful that our Lord never puts anything on us that we can’t handle? I believe in PRAYERS!! It’s going through the trials that makes us stronger as long as we keep trusting
ruth says
in Him!!! I don’t know you personally, but what I do know of you, you’re a very strong christian lady, who loves her Lord very much. We have the GREATEST PHYSICIAN in the world !!! God is so Good to all of us!! You stay strong !! God has all the ANSWERS!! God bless you and your family. Prayers are going up!!!!
Ruth
Anne Elliott says
Thanks so much to all of you, especially for your loving comments and promises to pray. It means SO much! I also appreciate the suggestions and ideas. I’m making a folder with things to try from all your suggestions, because this is new territory for us. THANK YOU! (((hugs)))
~Anne
Suzie says
((((((((Anne)))))))))) I am SO thankful I just saw this post on your son Alistair, and that you shared with us about it! I am praying right now, and I plead the Blood of Jesus over Alistair, you and all of your family, and I pray for the Peace of God that surpasses all understanding to guard your hearts and minds through Christ Jesus……I pray Lord that Anne and her family with not be anxious over this, but will trust in YOU Lord Jesus, for you have your hand upon them and will see them through each step of the way. I thank you Lord for their Trust in You Precious Lord Jesus, and that you will NEVER leave them nor forsake them! I thank you Lord for the praise reports that will come forth through all of this and that Lord, you will get ALL the Glory, Honor and Praise in Jesus Name, AMEN!
Love and hugs to ALL of you….please keep us posted! I will continu to pray for you!
Suzie