Thoughts and Prayers for those in need

Please lift up Ryleigh Charles Archer (RC). She is distant kin to us. She is just over a year old, been in hospital 6 times. Born with numerous health issues. She just had cleft palate surgery yesterday.
She has some hard miles ahead of her, but GOD has a plan...

 

God watch over this little one. Your love and presence are miracles of healing.

 

Copied her info from her mom's FB page...she needs lots of prayers...

“The Spirit of God has made me; the breath of the Almighty gives me life.” - Job 33:4

A not so quick update on our “Smiley Ryleigh” as Hudson calls her :

Ryleigh’s diagnosis at birth is what’s called Septo-optic Dysplasia (SOD). It’s a developmental disease where the frontal part of the brain called the septum pellucidum is missing or underdeveloped. This causes underdevelopment of the optic nerve, pituitary gland and certain parts of the brain. Some other common associated features are cleft palates and heart anomalies, both of which she has. Her cleft, along with retrognathia and micrognathia (under development of the jaw) yielded a diagnosis of Pierre Robin Sequence [for all you SLPs], which causes issues with sucking and swallowing/oral digestion- HENCE the NG tube. Some other issues that presented themselves are a horseshoe shaped kidney and an imperforate anus. We are currently under several specialty areas to make sure our girl is getting the best care possible. A lot of this has been a “wait and see” approach and will continue to be as she grows.

Some praises:
-Latest labs show her endocrine levels are holding steady. They aren’t GREAT, but maintainable for now, eliminating the need for any type of interventions/hormone therapy currently.
-Latest echo shows no change in her heart. Instead of a complete coarctation, the aorta is extremely narrow in that area (Hypoplastic aortic arch). Surgery will continue to be pushed until they see she absolutely has to have it.
-Last appointment with general surgery was promising in that an analplasty may NOT have to be done. We are hoping to avoid this surgery if at all possible. The original discussion was that this would occur between 3 and 6 months.
-Last appointment with otolaryngologist seemed to think no type of facial reconstruction surgery will have to take place. We’ll join the craniofacial clinic in January for her inevitable cleft operation and have further conversations. A lot of this will depend on her progression with her suck/swallow coordination.

In the coming weeks, we’ll be seeing neurology to discuss brain activity/possibility of seizures, with tests to follow. She will also get a G tube since she still can’t take in enough for oral feeds and we’ll say GOODBYE to the NG. She’ll have a fluoroscopy VCUG procedure to check on any reflux/backup flow to the kidney. Referral for ophthalmology has been sent, and we’ll be waiting on that appointment. *Surgery for her cleft won’t take place until closer to the 9/10 month mark. *

Our biggest prayers currently over our girl are that she can avoid any hormone therapy for as long as possible. That her heart will continue to do what it needs to supply her body the blood it needs. That we can avoid the analplasty surgery and she can tolerate her anal dilations here at home like she absolute CHAMP that she has been. That the transition from the NG tube to G tube will be smooth, and we’ll see improvement in reflux / she’ll be less irritable. That the VCUG shows no back up. That her speech and occupational therapies show progression in feeding/swallowing and muscle weakness. That she can continue to regulate her body temperature and blood sugar. That we hear from the ophthalmologist and gain some clarity on her vision. We know our girl can see to some extent, and we love her sweet smiles (and furrowed brow. )

Thank you all for your thoughts, prayers, check ins, calls and texts. This girl is loved BIG time. Her brothers don’t stop kissing on her and are the best protectors.

She’s going to move mountains And as her mama, I will go to the ends of the earth to make sure she has everything she needs to do just that.

 

Thanks brother

 

Prayers sent for Ryleigh and family.

 

Prayers from the border for Ryleigh

 

Prayers being sent

 

Amen

 

hope she gets better poor girl.prayers sent.

 

Thoughts and prayers for a speedy recovery.

 

Prayers for her and her family.

Tragic situation.

 

I just read the post from her mom. Saddened my heart and brought tears to my eyes. It's so tragic that children have to go through things like that. Praying for her and her family.

 

Prayers outgoing

 

I second the idea of elders, oil, and prayer.
For the family as well.

Praying

 

A while ago I posted about Mrs. Sourwood living with Leukemia. Recent visit shows her numbers are very low(which is good) and still moving towards remission.

Praying for remission, but thankful for God’s grace. The ten year prognosis is about the same as a person without it, but her daily medication is a life long thing.