Monday, January 30, 2012

5th week of steroid treatment

Edmond is starting his 5th week of steroid treatment (taper dose now) to end the spasms. Edmond was spasm free from the 7th to the 23rd of January, but he had a light one on the 24th and has been having them again sporadically, about 1-2 a day, but they are at a much lower intensity than previously. We will see the neurologist on February 8th to discuss this reaction, the hope continues to be that they will stop completely, eventually he will outgrow them but there is a concern that untreated infant spasms could contribute to future developmental delays which is why the doctors continue to try to stop the spasms. Through prayer God has shown us that no matter what Edmond has to go through during this time in regard to treatments and no matter what decisions we have to make as parents, Edmond's life is ultimately in God's hands and God's plans for Edmond's life will come to pass. We take comfort in this and continue to choose to trust in the LORD for our son, but these times are very challenging for us emotionally and also can be physically draining. People like to say, "God doesn't give you more than you can handle,"... well I used to believe that,  but now I am utterly convinced that GOD TOTALLY GIVES US MORE THAN WE CAN HANDLE, I now know that's what a true time of testing is. BUT He allows it so we can learn to give it to HIM and let HIM handle it, total dependence on Him. That's the hard part, feeling the weight of something so heavy that you can't carry it at all and having to release it to God, every day, every hour, every moment of your day. And even when you release it to God, the pain of waiting, the pain of disappointment, the pain of the sacrifice is constantly there, and God is allowing the pain to be there on purpose. Wow, that's hard to swallow isn't it? God is allowing us to be in pain on purpose. Adonis and I are searching out what that purpose is, but it's possible that God may not reveal His purpose in this for some time and we know He is calling us to trust in Him. 
I recently shared with someone, "It's just hard to see your child in pain" and they said to me, "Is he in pain?" which made me stop and think about it.... and actually, it doesn't appear that Edmond is in pain, neither seizures nor spasms indicate pain, perhaps some uncomfortableness at most. I suppose it's hard to see your child not be healthy and strong as you had imagined they would be, but I am very thankful that he is not in pain. It's interesting the things you learn to be thankful for and the expectations that become frivolous when you are simply thankful that your child is still breathing day to day. That your child is able to eat, I never thought I'd be thanking God for that one. 

I also wanted to share that Adonis was recently encouraged by the testimony of Tim Tebo, I Wikipedia'd it his personal life and it says, 

"Tebow was born in Makati City in the Philippines, to American parents who were serving as Baptist missionaries at the time. His mother, Pamela Elaine (née Pemberton), is the daughter of a U.S. Army colonel, and his father, Robert Ramsey Tebow II, is a pastor.[1][10][11][12][13][14] While pregnant, his mother suffered a life-threatening infection with a pathogenic amoeba. Because of the drugs used to rouse her from a coma and to treat her dysentery, the fetus experienced a severe placental abruption. Doctors had expected a stillbirth and recommended an abortion, even though illegal in the Phillipines, to protect her life,[1] but she decided not to have one.
Tebow is the youngest of five children.[15] All of the Tebow children were homeschooled by their mother, who worked to instill the family's Christian beliefs along the way."

UM!!! Dont you love how the MIRACLE of his birth is just passed over so lightly like it's no big deal that a pregnant woman who was in a coma was revived and that a placenta abrupted baby was born ALIVE!!! Not to mention healthy, not to mention an NFL pro. Wow. I'd say that is something miraculous, THank God for the faith to trust God and have that baby, thank God for these testimonies that we can continue to cling to, not just in Bible days, but in today's world. Please keep Adonis and I in your prayers we are constantly battling our emotions, especially for me as a mother it can feel impossible at times to make it through each day. I am so thankful for my husband's strength and stability. Last night Adonis prayed that even though science is stacked against us, God is mighty to save and to show His power over all of this. 

Tuesday, January 17, 2012

Edmond has his 6 month appointment tomorrow...

I'm going to try to get a post in before Eden awakes from her nap so here goes... Edmond is doing really good, he was 6 months old on the 1/7/12. He is on a taper dose of the steroids and adjusting back to his sweetheart normal self quickly :) He has not had a spasm since January 7th so the medication and our prayers are seemingly working well. Praise the Lord. He has a few more weeks of the taper dose and then can come off of the steroid completely. Right now he is also taking amoxicillan for an ear infection in his left ear. We decided to keep Edmond on the 2.7ml dose of keppra, the anti-seizure medication, eventhough he had a breakthrough seizure on December 28th, but has been seizure free ever since 12/28 and still remains on the same dose. Thank you God. Edmond is now receiving services from Golden Gate Regional Center and has weekly physical therapy here at home on Wednesdays and also in home supportive services including more physical therapy on Fridays. His head strength is increasing daily, he is such a joy to us. Here is a picture of him in his jumperoo, (with a few added pillows for extra support) ... phew made it before big sis got up. Pray for Eden, she has a really severe diaper rash... Edmond has his 6 month shots appointment tomorrow and Eden will also see the doctor for her rash tomorrow, it's time to start potty training her... fun fun. :)

Tuesday, January 10, 2012

Eye Doctor Appointment

Edmond had his first eye doctor appointment today and it was overall positive.  The doctor agreed that he appears to be tracking momentarily, (objects, people) and responded consistently to the lights being turned on and off. She stated it was especially good that his optical nerves appear to be very healthy (brain conditions often cause damage to these nerves which could indicate vision problems) but Edmond's optical nerves look really good! She said that Edmond is really farsighted, (farsighted is normal for babies, but Edmond was more farsighted than normal). She also noticed that when shining light into his eyes, he doesn't readily blink in response which the doctor would like to see. Edmond's eyes shake or twitch at times, it's called astygmus? I think. Well she said that it is a good sign that they only shake right to left and not up and down. Edmond also smiled 4 times for me today, which was a great part of the day for me, the other great part was listening to Eden cracking herself up playing hide and seek. Here's Edmond on our way to the appointment, in his bear hat that Grandma Jennifer bought him.

Sunday, January 8, 2012

One week down of steroids...

Edmond had a difficult 6th and 7th day of treatment, but his irritability for this treatment is so much better than the month of injections we had to do in November. He is sleeping well through the night. His spasms have decreased to almost none. During the week he had one spasm on Wednesday and one on Saturday morning which was short, less than 3 minutes. This is a significant response to the prednisolone, before this treatment he was having 3-5 spasms a day and usually every time he woke up. Unfortunately he still hates the taste of the prednisolone, even with added flavoring. I am using all my tricks to get it down him without him throwing up, but it is still difficult to do twice a day. The tapering dose began today, but it is a slow taper so we will have to continue to deal with administrating this drug for another 6 weeks!!! They don't tell me this stuff when they first gave it to him ( I thought it was going to be less than 2 weeks from start to finish), so I'm a little frustrated, but I know it will go by fast. Six weeks is better than the alternative year long treatment so we are definitely continuing to ask God to intervene and cause this treatment to work to get rid of the spasms. On a great note, Edmond has not had any seizures since the short one he had on December 28th, this is a major blessing. We have an eye appointment this Tuesday and I also just received a voicemail from the newly assigned physical therapist who is going to begin with Edmond. Will update after these appointments are completed.

Thursday, January 5, 2012

Edmond's 4th day of treatment....

Edmond did very well today. He is currently on a dose of steroids twice daily to treat his spasms with the hope that at the end of this treatment, the spasms will stop altogether. This is his second treatment of this kind. The first was a series of injections that helped him be spasm free for a little over a month. The hope was that they would disappear completely with the first treatment but Edmond began having them again on December 1st. We visited his neurologist yesterday, who recognized that Edmond is having a good response on the steroids. Edmond had no visible spasms today! This is good news and telling that the treatment is working well for him. The doctor is going to continue him on this dose for a full week (3 more days) and then begin a tapering dose for 3 weeks. It was a blessing to have Edmond spasm free today. Here he is after leaving the doctor's office.