JRA

Somara has been diagnosed with Juvenile Rheumatoid Arthritis.  This is another chronic illness.  People ask me constantly how I feel about her being sick and how I handle it.  Well, I feel sad, helpless and discouraged.  We can only treat her symptoms, there is NO cure for DiGeorge and she will have to deal with most of this stuff for the rest of her life... I handle it the best I can by continuing to ask God to give me strength, most days I am ok and some days I just feel down. Please continue to pray for Somara and please pray to give me the strength I need to keep taking care of my little angel.

Catching everyone up...

I have had several requests to post on my blog to let everyone know how Somara is doing.  Let me just start by saying God is so good!  I posted in November that Somara was having a major heart surgery in Cleveland in December.  The Dr went in and moved her left sub-clavian vessel off the the aorta and re-connected it to the carotid. Somara was having lots of problems choking while she was eating.  The surgery went really well, she was in the hospital for three days and we were in Cleveland for 10 before they released her to fly home.  We experienced a lot that trip that we had not experienced before.  She is eating so much better and not choking with every meal! Somara has had her G-button since she was a year old (almost two years) and her gi dr took it out the first week of March because she was not needing it anymore.  Somara cried and said, "Hey give me back my button, and then when we left she waved at the dr office and said, "Bye bye button, see you later." That was it she was over it.  Now she tells everyone that asks "the doctor took my button" Somara has also had several different infections since November (upper respiratory, sinus, and others.) that have kept her just not feeling great so her DR called me two weeks ago and said they were increasing the medicine they give her during infusions significantly to see if it helps reduce infections. Her monthly infusions went from being about a 5 hr day to an 8 hr day.  This makes for a VERY long day for both of us.  The infusions still make her feel really crummy for about 72 hours after.  Somara has been complaining about her right knee hurting for about 8 weeks.  I took her to an orthopedic dr and to her pediatrician and they think she has juvenile rheumatoid arthritis.  We are awaiting the blood results to find out for sure, but we will be making a trip to Scottish Rite Hospital in the next few months.  Last but not least, Somara is having another surgery June 14th at Cooks Hospital in Fort Worth.  This will be surgery number 9 for my sweet girl.  She has a sub-mucous cleft pallet, which really means the muscles in the roof of her mouth are not formed correctly, a part of her DiGeorge syndrome.  She will be in the hospital anywhere from 48 hrs to 10 days depending on how fast she eats and drinks on her own.  Somara still goes to physical, occupational, and speech therapy twice a week.  Please continue to pray for Somara and for wisdom for the Dr's to keep her out of the hospital!

Heading to Cleveland

“Let the little ones come to me…” Matthew 19:14

Somara Aries McDonald was born on June 4, 2009. Just 3 months later she was admitted into the hospital with meningitis. Little did we know that this was the first of many battles we would face. At the young age of 2 ½ Somara has been admitted into the hospital 13 times and undergone 7 surgeries. These procedures included feeding tubes, “IV” ports to provide medication, and the administration of anesthesia 18 times in her young life. Somara has been diagnosed with DiGeorge Syndrome, a rare chromosome deficiency that has significant negative effects on the immune system and acts as a stimulus to many other medical issues.

It is not unusual for a child with DiGeorge to be born with a heart defect. In Somara's case, the main blood vessel connected to her heart is tangled with her esophagus and trachea. Throughout the past year the doctors, within reasonable traveling distance, have exhausted every possible treatment they are capable of performing. Somara's only option is complete reconstruction of the blood vessel leading to her heart, esophagus, and trachea. The time has come for Somara to have this procedure and we as servants must trust God to make it possible. There are only two doctors in the country capable of performing this complex procedure.

Somara is scheduled to undergo surgery on December 6 in Cleveland, Ohio. Due to the short notice of the surgery, little time has been left to find funding for transportation, food, and lodging necessary for her parents to assure Somara receives the medical attention she desperately needs.

Please consider making a financial contribution to secure the future of this precious child. We are estimating that they will need roughly $3000. Though this amount seems unreachable to the family at this time, given the daily expenses of raising a special needs child, I believe God is capable of moving mountains with the faith of a tiny mustard seed.

I am asking that above all you pray for my beloved niece. Prayer is first and foremost the essential element of Somara's recovery and this request. 

If you would like to make a financial contribution please send a check to Beth McDonald at the following address or click on the PayPal button below:

404 Arbor Glen Court, Fort Worth, TX, 76140

Thank you so much for your prayers and support.

Miranda Ward
mirandawrd@gmail.com
817 713 2324

Catching you up...

Somara has had a busy couple of months. She has been getting ivig infusions since April. She has had 5 infusions and out of the 5, three times her port infiltrated. She swelled up and had quite a bit of tenderness from where the medicine went in right under her skin. At the end of July her Dr that has been doing the infusions called and told me that he would no longer be doing infusions in the office and that he would have to send us to the hospital for infusions. Somara had an infusion at the end of July in the hospital and the whole thing was quite a disaster. They first did not have the correct size needle to access the port and had to call other Children's hospitals to find a needle. We set around waiting for a good part of the day. Finally they get it started and it runs for about an hour and the port infiltrated again. The Dr said it was very important that she got the rest of her medicine and that they would have to start an iv. It took them four sticks and about two hours but finally got an iv started in her foot. Then they continued her medicine at the fast rate she was at before the port infiltrated which caused an extreme spike in her blood pressure, so they had to slow it down to a much slower speed. We were at the hospital all day long and she was worn out. The Dr came in about 9pm and said we needed to pull her port out and put a new one in. The following Monday Somara had her 7th surgery to pull the first port out and place a new one. They had to open her up on both sides of her chest because they put the new port in on the opposite side. Somara had a hard time recovering from this surgery due to lots of bleeding and excessive pain. We are in the middle of changing Doctors so that she can go back to having her infusions at the office instead of the hospital. It is very stressful changing Doctors and the new Dr not having a history with her. Please say some extra special prayers for her over the next week or so, we had a test run on her yesterday and the Dr called me today and we go in next Tues to get some results. I can't really go into detail about it yet but prayers are needed. Thank you to everyone that prays for her already, it is such an encouragement to know so many people lift her up in prayer.

Iv ig infusions

Sorry it has been a while since I updated this, the blog website has been down. Somara started her iv ig infusions in April. She will get one every month. It is about an 8 hour process. The infusions make her really sick for about three days after she gets them. She runs fever, has respiratory problems and looks washed out. They are not good days for her. The infusions in the long run should help build her immune system so she has an easier chance of fighting infection. She is quite the little trooper. :-) She got her bipap machine last week, but it is going to be tough to get her to use it because the mask covers her whole face and she is terrified of it. God has really kept her in his hand the last couple of months, there was s couple of times she stopped drinking and got dehydrated, but I was able to get enough fluids through her button to keep her home. The Dr told us last month that they thought she had lost most of the hearing in her left ear. Today we took her for a double audio test and found out that she is normal in both ears and that during the hearing test she just was not responding to humming, but she did respond to noises in both ears. What a blessing! God is so good and every day he gives us strength to continue. Somara is such a blessing and a wonderful baby and I am truly lucky to be her mom. It seems like the doctors have finally got her on the right path to being better. Our next thing that we will be dealing with is looking into getting her sub mucous cleft pallet repaired. We are going to see a cranialfacial surgeon next Friday.

Sleep Apnea

Somara has been diagnosed with central sleep apnea. They originally did the first sleep study about 6 weeks ago. Typically when kids have sleep apnea it is obstructive not central. When a child has obstructive apnea they remove the tonsils and adenoids and the child gets better. Somara has central which means it is neurological. Her brain does not tell her to breath while she is sleeping. When they did her sleep study 6 weeks ago, she had 61 episodes in 8 hours where she stopped breathing for 6-15 secs. Her O2 level dropped at least 4% each time. I talked to her doctor and they say she has a bad enough case that they are going to put her on a bi pap machine. The machine will breath for her every 15 secs. They say the machine will help her a whole lot. So tonight we are having another sleep study to fit her for a mask and see how the machine does for her. We are still working with the insurance company to get her approved for iv ig infusions. Once she is approved for that, it will be once a month. They will admit her and give her imunoglobulin infusions. Each time it will take about eight hours. Praying this machine helps her get some much needed rest over the next several days, weeks, and months and praying the insurance approves the iv ig so we can get them started.

Surgery and ICU

Somara had her surgery today. It has been a very long day and she is in lots of pain. She loved eating popsicles though. She seems miserable and is not sleeping well, which means neither am I. She is in the ICU and I am glad I get to stay, even if I have to sleep in the worst chair ever. Thank you to everyone that has been praying for us, it means so much. I will further update this tomorrow.