Sunday, February 27, 2011

Our sweet little princess...

Somara surgery

Somara is having surgery on Tuesday. She is having her tonsils and adenoids removed and a new set of ear tubes put in. We are very hopeful that the surgery will help fix her sleep apnea amongst other things. Please pray for us, her recovery is going to be tough this week.

Wednesday, February 16, 2011

Feb. 16, 2011

This morning we had to be at the hospital at 6:30 for Somara to have her port put in. For the most part the doctor started on time which was a good thing because she was starting to get very fussy with nothing to eat or drink. The procedure lasted about 50 minutes. Somara has two incisions and a big bump on her chest where the port is. She was in some pain but the Dr prescribed pain meds. Coming off anesthesia is never fun but she did much better today than she has done in the past. She is sound asleep in her bed right now and probably will be for a few hours. Looks like her tonsils and adenoids will be removed March 22nd. She will also be sedated March 4th for an MRA of her neck. Thank you to everyone that has been praying for her. Almost over this hump... :)

Tuesday, February 8, 2011

Feb. 8, 2011

Somara was in the hospital for 8 days last week.  She was extremely sick and they could not get an iv started.  Her Dr has decided that it is time to put a port-a-cath in.  It should be an outpatient procedure.  I am trying to get it scheduled for the end of this week or the beginning of next week. Somara has got a lot going on in the next few weeks.  She will have the port put in, she is going to have a sleep study done, and she is going to have another surgery.  The surgery is to have her tonsils and adenoids removed and to put in a third set of ear tubes.  The doctor is pretty sure that he is going to admit her into the ICU for a few days following the surgery and then see how she is doing.  He informed me that she will be at serious risk for infection so it will be a tough recovery for her.  Please say some prayers that the next couple of weeks goes good for her and that she will recover quickly.  She is also going to start iv ig infusions to help boost her immune system.  She will go into the office every month for the infusion. More to come...

Getting started...

For those of you that are familiar with what is going on this might be a repeat, but those of you that are not this will hopefully give you an update.
Somara was born in June 2009. She has had many health issues and many struggles that she has had to overcome.  In September of 2009 Somara was admitted into the hospital with meningitis. She was there for 10 days and that was the beginning of her long road. She is now 20 months old and has been admitted 11 or 12 times into the hospital. She has had 2 surgeries, which include a vascular ring repair and placement of a g-button. She has also had two sets of ear tubes.  Somara has been diagnosed with DiGeorge Syndrome.  She does not have much of an immune system, therefor she can not fight off infections like most kids.  It has been a constant battle for our family.  We took her to Childrens Hospital of Philadelphia in December to have the specialist there see her.  We have had to adjust alot to accommodate her needs.  I have quit my job to stay home with her. Somara is in physical, speech, and occupational therapy two days a week.  She has leg braces that have helped her with stability when she is walking.  Somara is a very special baby and we are so blessed to have her.  When things get really stressful and tough I thank God that she is here and just pray that he will give me the strength to keep going and to be the mother that Somara needs in her time of struggles.