16 months! Part 1

I can't believe Elijah is 16 months old! Here is an update...

The diagnosis we received for Elijah was Osteogenesis Imperfecta Type III.  OI has been classified by type according to a system based on mode of inheritance, clinical picture, and information from x-rays. Although the features vary greatly from person to person, OI Type III is the most severe type among children who survive the neonatal period. 


We were told that after the first 3 months when you have your first baby that time would fly. This is a lie. Well in our case anyway. We experienced a lot of the same things everyone else does when having a newborn. It's just that we had the added responsibility of his delicate condition and managing his healthcare. Deciphering all the medical stuff really was quite overwhelming. We received a call from the school district at 4 weeks. Yes, you heard me right, dealing with the school district at less than 2 months old. Who knew! Not me, so I'm glad they reached out to us. There has been no rest on the roller coaster of medical care since he's been born. 

Here is Elijah's list of Dr.'s and other professionals:

Pediatrician (a given)
Cardiologist (heart)
Audiologist (hearing)
ENT (ears, nose and throat)
Geneticist (For diagnosis, I don't really know what else)
Pulmonary Dr (Breathing, Lungs)
Endocrinologist (she looks over his IV treatment so she's important)
Neuro Surgeon (head/brain surgeon)
General Surgeon
Orthopedic Surgeon A
Orthopedic Surgeon B
Opthamologist (Eyes)
Occupational Therapist
Physical Therapist A (on land)
Physical Therapist B (in water)
Speech Therapist
Infant Stimulation Teacher
School District Audiologist

We also have to coordinate with his insurance, Regional Center, California Children Services and the school district.  We currently have 7 appointments a week (2 Physical Therapy, 2 Occupational Therapy, 2 Aqua Therapy and a Infant Stimulation session) plus any follow up appointments from the list above. Some are scheduled together to make the most of the trips out of the house.

*Whew* ....so now you know why I haven't had time to update this blog.

There is much more to bring you up to date but I literally have to pack to head out to Omaha, Nebraska. We are taking Elijah to see some rock star doctors out there. I will say though, that Elijah is doing extremely well and is a very happy little man.

Let us not forget.

It was one month ago yesterday that Elijah came into this world. Being a mom of a newborn all the days just run together. Day seems like night and night like daytime. Since I am no longer working out of the home I haven't really noticed weekends anymore. I can't believe it's been a month already. I know that in no time he won't be a bundle in my arms anymore (this is my excuse for holding him all the time).
As this first month comes to a close I am evaluating my conversations with God and outlook on our situation. I know we are all still praying for complete healing for Elijah, but one thing I don't want to happen is to forget  what God has already done. As time passes it's easy to just focus on what we are asking for and not remember the prayers already answered; the miracle God has already done. The scriptures are full of examples of God's people forgetting as time passed. It's only been one month and how much am I thanking and praising God for what He has done compared to asking for what has not yet come?

God has moved on our behalf. Let us not forget.

Fear & Hope

"He does not delight in the strength of the horse; He takes no pleasure in the legs of a man.
The LORD takes pleasure in those who fear Him, In those who hope in His mercy."
Psalms 147:10-11


God doesn't care about what WE can do and what WE are capable of. He wants us to fear (have reverence for) Him and have hope in Him. Somehow we have to have this holy reverence for who He is and also have this hope in His mercy at the same time. 


There are many things that our medical field can offer our son but it is God that we go to first. We know a glimpse of His power and we have reverence for Him. We trust in His strength, not in ours.  It is in His mercy that we put our hope first and foremost.

How to love Elijah

Elijah's current condition demands extra caution when around him. Here are some guidelines we have to live by for now. Some were taken off the osteogenesis foundation website.

1. If you are sick please don't visit until you've been well for 5 days. Or if you see us when we are out please steer clear.We know to be cautious with any newborn when we have colds. Any sickness would even be harder on Elijah and his respiratory system. We are overly cautious of being around children or crowded places for now (don't take it personal).
2. Never shake or pull or push on a limb, or bend it into an awkward position. This includes trying to put on any clothes.
3. Extra care is needed to support the head. 
4. Do not lift him from under the armpits. Please let mom or dad pick him up.
5. If you happen to hold him, all rings, bracelets and long bulky necklaces must be taken off. Beware of any hard plastic like buttons or metal on your clothing that could come in contact with Elijah. 
6. Be aware of where the baby’s arms and legs are at all times to avoid awkward positions or getting a hand or foot caught. Especially important when taking off or adjusting his swaddle blanket.